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bamboo42
03-21-2001, 07:46 AM
Anybody ever hear of mastocytosis? This is what my doc thinks I have. We're already in debt thousands of bucks that insurance won't cover; it will take at least that much again to confirm his diagnosis and rule out other problems. Any info greatly appreciated!

bamboo42
03-28-2001, 11:51 AM
I appreciate your time, and the info you provided. However I am/was looking for people who read these healthboards who may have personal experience with this disorder. Thanks again!

clancy
06-06-2001, 01:52 PM
My husband had this disease. From what I understand, there are two forms:

Mastocytosis, which presents large reddish blotches on the skin that are raised and often itch (urticaria pigmentosa). The treatment he had for that was a UV lamp and antihistamines.

Several years later he had full blow Systemic Mastocytosis. The mast cells proliferated and attached themselves to vital organs, and ran rampant in his marrow. His symptoms varied, as did his treatment.

We contacted NORD (National Organization for Rare Diseases), and got names and phone numbers of other people with the same disease. Their symptoms (like Jim's), were all over the map.

Some people live with the disease and it doesn't progress. Others aren't as lucky. Jim died in March, 1997 from liver failure due to the massive amounts of iron deposited from all the transfusions he had to have.

We had a wonderful doctor who stayed with Jim through it all. We had a wonderful staff on his final day, they were kind, gentle, loving with Jim and with me.

My prayer for you is that this disease will not progress. I also firmly believe that attitude is IMPORTANT! I am convinced Jim lived longer because he was not going to let it sink him.

Good luck to you both.

------------------
clancy

bluberikitten
06-16-2001, 03:40 PM
Howdy! Um... My aunt was just diagnosed with Systemic Mast Cell Disease. Is it different from Mastocytosis? And she has Addison's Disease, would that affect her?

clancy
06-17-2001, 01:37 PM
Yes, as I understand it, Systemic Mastocytotis and Mast Cell Disease are the same.

I would imagine having Addison's Disease in conjunction with MCD would make a great difference.

clancy
06-21-2001, 10:40 AM
How are you doing? You haven't "spoken" at all lately...

summerbreeze7
04-30-2005, 04:00 PM
I am sooooo sorry to hear about Jim; I was recently dx w/tmep/mastocytosis??? I have seen the two come up on other searches etc. My dermatologist did tell me it is very rare; especially if you are dx at an older age (not child) I am 44, and trying to learn as much as I can about this tmep etc. too many mast cell; and praying it doens't become systemic. I remeber my dermatologist mentioning that a certain blood test showed that I needed to be checked at a hospital w/Dr's who are in the know of tihis confusing adn scarry dx. Again my aplolgies to Jim's family & loved ones. Take care, and I am going to post about my lupus, and tmep dx; my doctor said that autoimmune can have many little seperate conditions with you'r main dx. I'm hanging in there. You too hang in there, and keep posting; you help people so much. Just reading from other people hass helped me to cope. thanks

summerbreeze7
06-04-2005, 10:44 PM
just an update here; I seen a dermatologist today, and he looked at my skin asked important questions, looked at some copies of lab work etc. and he wants me to see a histologist and an oncologist as soon as possible. I am really getting a little worried at this point. I have had bone pain, and headaches that go on forever. I did read that mastocytosis can cause CNS problems too. :eek: Mine is actually called telangiectasia macularis eruptiva perstans (tmep) I might have to have a bone marrow biopsy :rolleyes: but I guess thats part of the process. Has anyone had a bone marrow biopsy????? Is it very painfull????????????? I will post with the findings as soon as I know anything. Hopefully the feferral will go through fairly quickly. Take Care. mom in California. Any input would be appreciated. John, Clancy, anyone who knows about this rare disease. Thanks :)

tip2mol
06-04-2005, 11:03 PM
Hi,

I do not have mastocytosis, however- it was highly suspected with me for many months and they were treating me with the same medications as if I had the disorder.
I had many of the same symptoms. I had a horribly high prostaglandin D2 level that continued to elevate, however- my tryptase level never elevated at all.
It was suspected that I had systemic mastocytosis. They are still keeping close watch on my lab levels.
I did have a bone marrow biopsy. They are not fun. If you can convince the physician that is doing the biopsy to give you a nice sedative or even conscience sedation (like they give in the GI lab- doing endoscopies or colonoscopies)-- then it is so much easier. One positive, it is very quick-- but there is a huge pressure when they enter the actual marrow because that part can't be fully anesthesized.
I hope this helps answer some of the questions. I will check back in and hopefully be able to answer some more questions if you have any.

Johnster
06-05-2005, 09:34 AM
Summer,

Iím not too sure of all tour symptoms or your knowledge of this disease. There are 2 different basic forms and I suspect they want to rule out Systemic which is the internal form of this. There are a few tests for this and I believe the rules that they set for making a definite diagnoses state they have to meet two of these tests positive before making a definite diagnoses??? Anyway, they may test you if they havenít already for some of these. BETA Tryptase not just tryptase. Many labs or docs donít know this or know how to do it. Urine histamine is also used at times. In cutanious mastocytosis they do a skin biopsy. Some people can have just cutanious some just systemic and some both. Unfortunately the most somewhat accurate needed to rule out systemic is the bone marrow biopsy. It is very important that they do the right lab tests on that too with the right dyes ectÖ As far as the from bone marrow biopsy pain. I may be the wrong one to ask because of worse pains from other things. I have heard reports from many others good and bad about that. I found it uncomfortable and not too bad. I was put to sleep with some mild drug. I woke in the middle of the procedure though. You will be fine and Iím glad to here that you are going to do it though. Too often I here of people putting off this procedure out of fear. Thats insane. I am also a little concerned to here about the headaches and bone pain. Where is the bone pain mainly at if I may ask? Please keep me posted.

Best Wishes Sincerely
John

summerbreeze7
06-05-2005, 01:53 PM
I don't mind you asking at all; I actually started having bone pain in my thigh area; and that is where I have the most scarring/brown type marks left from the degranulation of the mast cells. :eek: This has really been a roller coaster for sure. I am now realizing that I may have been mis dx. with having fibromyalgia. I know it's real the fibro; I have friends who have it, but now that it has been a few years.......Sjogrens Syndrome came into the picture as well as borderline lupus. So I do know how the heat, and being hot can be. It can make you feel totally sick. I have to be in the shade at baseball games etc.. (both of my sons play) they are 16&18 almost 19 years old. The TMEP I was dx with is really hard emotionally. I was told yesterday to see a hematologist, and an oncologist. I am thinking positive, but it's soooo hard to do. The dermapathologist who I seen after seeing a rheumatologist (due to the rash/scarring etc.) and joint pain, headaches etc.. is the one who did the two biopsies. She then sent them to the Mayo Clinic. The report came back as TMEP.....at first she thought maybe uticaria hyper pigmentosa. I too read where this is an orphan disease. very rare. But if we stay educated we can help each other. :) Did you mention on another thread that you were 19?????? If I may ask what led to the dx of mastocytosis????? Systmeic????? This terminology is still fairly new to me so;excuse the errors or spelling :) I hope you are feeling ok, and everyone with this type of mast cell condition stays positive!!!! Take Care~~~~~~~oh yeah I went to the Mastocytosis Society web page, and that is wher I found listed under Masto; TMEP. I hope it stays cutaneous. Keep posting so I will know about treatment etc....for you, and anyone elso with this going on. Medications etc.... knowledge is what we all need. ;)

Johnster
06-05-2005, 08:23 PM
Summer,

I know what you mean about this disease but I felt that it was even more important to me to find the top docs and private researchers in the country. I also found that it was important for me to know everything I could about this disease since most docs never heard of it. I have devoted hours every day to research for almost a year. It now is my personal belief that if and when someone finds more ways to work with and study this disease they will find better ways of treating most or all allergies and auto-immunes diseases. If you look back on some of my previous posts you may see why. This site wont allow duplicate writes or cut and paste so I can ask you to look up one of my old replies to someone. Go to the very first box of the main health board box called Open to all health related topics. Go to page 3 as of today and find a topic called lupus fibromyalgia and MS. The reply I am speaking of is on 05-28-2005 This may start to help you know what may be happening to you with all these diagnoses and why they want to go further with you. Good luck and write me any time.

John

summerbreeze7
06-23-2005, 02:40 PM
John, just wanted to ask how you are feeling????? what are your main symptoms???? I don't want to be a downer but, I'm just curious if we have any of the same symptoms. Did you mention a while back that you have systemic masto????? When I was first dx. the dermapathologist put me on two different meds. zyrtec, and atarax. The atarax I took at night (knocked me out) the zyrtec game me some stomach problems. I stayed on the meds as long as I could, about six months, but now I take benadryl before bed. I was waking up with hives really bad at night??????? Then our family was going back on Kaiser (hmo) so......I don't even know how much of the diagnostics etc. is going to be covered. I better make some phone calls before paying the $20.00 copay etc. before I see all of the Dr's. I want to know if they treat masto. I too try to stay educated on treatment etc. what is your opinion on the mast cell stablilizers???????????????? any way just saying hi, and hoping you are feeling ok :) take care, and I will post again. I am thinking positive, but it sure is hard. any more info you can share would help; if you get a chance:)

Johnster
06-23-2005, 04:05 PM
Summer,

Thank you so much for your concern for me too. I am O.K but have been better for sure. I still am a little unclear if you have been diagnosed for systemic masto yet. Bone marrow biopsy, and tryptase levels ectÖ??? It is also important to point out that I write people with this disease weekly and many were mis diagnosed at first simply because most doctors and labs do not have the experience or the means to do these tests properly. I understand your concerns and fears believe me. I have met quiet a few people with this over the internet from all over the world. I am always very careful of listing my symptoms though because although there are many far worse off than me I have only wrote to one of them who was worse than me. Especially at my age. I am almost 42 so I am around your age.

I would like to post better places for you to go and talk to others like us with just this specific disease but I am not allowed to do that on this site for some reason.

Good luck and God Bless

JohnD

marsella
06-26-2005, 11:33 PM
Summer,

I just found this cite. My 12 year old daughter was also diagnosed with what sounds like the same type of mastocytosis. We've been struggling to find a "treating" doctor. We, too, were told this was extremely rare. She has the brown spots on the right side of the trunk of her body. Some go away and others come. Every time she goes to the doctor, they take pictures of her "spots" - none of the doctors have ever seen it before. Recently, she started complaining of bone pain (legs, hands and wrists), headaches, and chills. She's had chronic stomache pains and diareha for years. She saw a peds gastrointologist, who found borderline excess mast cells in her intestines, but all her blood work came back normal (thank goodness!) and has now been referred to an immunologist. Her doctors are at UCLA.

It's nice to know we are not the only ones out there searching for answers.

Eve

Johnster
06-27-2005, 08:32 AM
EVE,

I am so sorry for your frustration with this and it happening to your daughter too. I canít imagine how it may have been on you so far. Fortunately there seems to be a pretty decent amount of kids who can, but not always outgrow this in the cutanious Ēskin typeĒ form. I am not too sure if thatís the case if it goes systemic ďinternals and organsĒ though. She is also a bit older than the studies I have read about too. Some people can have one form, or the other and even both. I currently have one nephew and one niece ďonly 6 and 8Ē for sure waiting to see a specialists because my sister explained what I had when they have been having trouble with diagnoses. I am so happy for you that her blood work came back normal to help rule out the worst and rarest forms of this disease. You are also extremely lucky your doctors properly diagnosed it because it gets mis tested and mis diagnosed too often as well. I would love to recommend any of the extremely few leading specialist researchers dealing only with this, I have found in various parts of the country. If she were my daughter I would make the trip to someone who has seen multiple cases of this with their treatment strategy for a second opinion before starting. Unfortunately this web site wonít allow me to help anyone that way because some have abused this site.

It is also important for you now to research like crazy!!! Most doctors never heard of this or seen it before. Chances are they may never see it again either. Some have never even heard of it. You will need to be more informed to help them out in the future. Even a trip to the dentist can be serious if she needs anesthetic. He definitately won't know what Mastocytosis is. She may also need to be evaluated for Anaphylaxis, ď The need to carry Epi-pens at all timesĒ like those who are allergic to bee stings. If so she may need a med bracelet as well stating this. It is also so important to research TRIGGERS and find hers. Avoid them as much as possible and at all costs. Things like heat, sun and hot tubs can be very serious. For some it is also spicy and other certain foods. In case you donít already know what triggers are. They are things that cause the sleeping overpopulation of mast cells to wake and react causing the damage by releasing histamine and even the immunes system to go to work. I hope this helps a bit. Let me know what I can do to help.

Good Luck and God Bless You All

JohnD

P.S. Have they prescribed or have her taking anything yet???

summerbreeze7
06-28-2005, 02:20 PM
Marcella, just wanted to say hello, and I hope you'r daughter is feeling ok. My spots on my legs have stayed the longest (thighs) my arms about 15 yrs. ago had the hives/spots really bad. It would come and go only on my arms. Then literally overnight the break outs on my arms stopped, and the spots went away too!!! I did start having headaches about the same time, and fatigue. Not sleepy.....more like weak all over. I did not have any bone pain then. My bone pain started about 5yrs. ago. off and on. These past two years have been the worst. If I have been sitting for a while; when I get up it takes a while to walk or even to stand. I will be finding out more very soon. I know my dermatologist did do a tryptase blood test a few times and the last one showed it was higher than normal. I will post again, take care!!!

Johnster
06-28-2005, 02:48 PM
Summer,

How are you doing? Iím sorry to here that you are having difficulty too lately. I see you mentioned a tryptase blood test. Do you know the #s? Do you know if it was it a Beta tryptase test? Have they considered or done a bone marrow biopsy for you either? You say you have been experiencing this bone pain for about 5 years. How often a week? Have they ever considered doing a bone density test on you??? I would still like to know more details about your symptoms and spare you any un necessary grief I have had if I see a pattern. As I said before, I do know a lot about this now and many people who have it too.

Sincerely

JohnD

Johnster
06-28-2005, 03:59 PM
I have been asked by some of you here to post my symptoms. Normally I am reluctant for reasons you shall soon see and understand. Let me start off by saying that at most the sites I visit and with so many who I have met worldwide with this disease there was only one person who had a worse time and case than I do so far at this time. I know there are some who are but they are even more rare. So please keep that in mind and realize that my intentions are not to scare but to help inform others of my symptoms that are probably far worse than any of you will ever dream of especially with proper treatments. My variant of this disease is different than some and called AGGRESSIVE Systemic Mastocytosis. SO PLEASE STAY POSITIVE!!!

Years prior to my diagnoses, some tried to convince me I was a hypochondriac because blood tests were all great!!! I went on for a long time stupidly assuming everything that was wrong with me was O.K. or normal and in my head. Even came close to passing out in the car on hot summer days for years. Then, after being in a car accident at 38 I went to see a chiropractor for back pains starting. In time I started getting worse so I quit seeing him. Next thing I know I would move or lift something and POP. A sound like when those guys crack you in the office. Another week or 2 and then POP again. Every time the pains were more severe and enormous shocks to my nervous system too. I have a very good tolerance for pain from past traumas but NEVER anything like this. I could not catch my breath. I almost suffocated. I collapsed to my knees and couldnít even scream! Never had I felt so alone and scared. If I owned a gun I may have used it at them moments wishing I had one. I knew there were pinched nerves and damage. I would swell from my rib cage afterwards. Pins and needles and all too. Every time I told myself I would get better wile sleeping in recliners for weeks and hardly being able to breath. I assumed the Chiro messed me up by cracking me too much and now nothing stayed in place any more. I found ways to get used to it and manage the pain. That was until I coughed or sneezed or whatever again and then it cycled all over again with another POP. Next thing I know people are asking me if Iím shrinking. I go back to my doc who I seen 2 years earlier. They had me get on the scale and freaked out because I lost 4 Ĺ inches in those 2 years. Seems like a lot for just discs hu? They sent me for a new MRI next. They compared that to the one from 2 years ago too. The new report found that I had compression fractures to 10 vertebrae all missing 40 to 50% throughout the thoric and lumbar regions resulting in multiple pinched root nerves at the spine. To those of you who do not know what a compression bone fracture is. Itís a fracture caused by severe Osteoporosis. It doesnít fracture like normal. It blows and crumbles into powder as if you just put a lot of weight or pressure on a salad crouton or dried out bread. I asked for my films and I could not believe it. The discs seem possibly to be in tact but they fell into the voids of my bones that collapsed like a caved in roof. People say to me oh you should go get that fixed with fusion. They do it all the time. I say, ďThey canít fuse rotted wood with more nailsĒ. Next they had to find a cause for a 41 year old male to have worse bone density than a 90 or 100 year old. I went thru tons of tests and finally it turned out to be a rare disease that most doctors and labs donít know about. They tested me for everything else and said I probably wouldnít have this. The odds are better for winning the lottery. Here I am now. Being told not to lift anything too heavy or I may wind up damaging spinal cord. I have been on full chemo including self-injections of interferon every other day for over 7 months now. Most people with Masto will never need it, but I am on it for life. I have been getting side effects like dry skin. The rest of the symptoms I am getting come more frequent and can be from the masto, chemo or both??? Tryptase levels before treatments and during the Marrow tests were at around 80 and should be under 10. Three months later wile on chemo and $2,500 a month meds and it still went up to 98. Last week they were tested again and at 97. I asked if the chemo might not be working because I have read some studies that say it may have no effect on a third of some people and get no answers. Now Iím just not sure they can answer what they may not know. I have all the common symptoms. In time they have become more frequent, severe and at times more debilitating for me. A word about the heat, I went to a specialist researcher before I allowed the locals to work on me. He said STAY AWAY FROM HEAT AND NO WAY HOT TUBS!!! I guess heat cracks those puppies open and release the tryptase and histamines and gets the immune system going too. As a precautionary anyone who has this may want to ask your docs to do some bone density tests too, especially if you have had pain in the bones in your back, hips, or legs and shoulders. One other thing worth mentioning. Some of you may at times even if rarely feel overwhelmed dizzy and lightheaded as if you may faint. If so you may ask your doctors about Epi-pens too. It can be somewhat common for some masto patients to become Anaphylaxis and need them just like people who need them for bee stings.

Good luck and God bless my masto friends.

John

summerbreeze7
07-14-2005, 07:52 AM
John, thank you for your time at explaining what you are going through. Alot on your plate for sure. You mentioned interferon; is that a chemotherapy type med??? I feel for you, and anyone with masto. Long story short (yeah right :) I just recently had a bone marrow bx. :eek: which after injections to make it a little more comfortable. I knew I had to have this test done so I basically took deep slow breaths and squeezed the assistants hand really hard. :) oh yeah! befor my bx. the hematologist mentioned to me that masto can cause problems with the spine. I was not moving very well in his office due to lower back pain. The Doctor helped me onto the table and off of course. I was told a few years ago I had bulging discs etc. degenerative disc disease and such. The doctors didn't really go any further. One of the Doctors was a Rheumatologist (I was having joint pain all over) I never went back to him. The puzzle is just now starting to get put together. Now I know why when walking to my car etc. all of a sudden I feel like my legs just wont do what my brain is telling them to do. Also I was in a dermatologist office about one year ago (when this all started comming together) as far as the dx. During that office visit I used the restroom, walked down the hall towards the exam room and broke out all over my chest with hives, hot skin, large blister type bumps, shortness of breath etc. I sat down immediately, and when the Dr. came in within one minute; she said wow you are not looking good at all, and seen my chest. At this time my blood pressure was taken and she had called in associate. It's like I couldn't breathe normal. Then after relaxing for a 1/2 hr. I went to get up to leave, and could not move my legs. I was told not to move, and that I was going to go to ER now. I could feel my legs, but I could not stand. My husband showed up, and took me home because I started feeling better. I felt like my systme was just shutting down/huge allergic attack. So any way one year later I am getting to the bottom of this hopefully. The hematologist told me in about three weeks he will have answers etc. from lab, x-ray (head to toe) and bone marrow bx. results. He told me to bring someone with me to my next appt. I am trying to stay positive, but when he said the thing about the spine being affected.........I have a different feeling............. I know it's just not sore from working out. My back hurts 24/7 for the last six months. John, thanks again for all of your input. I hope you are having good days. The interferon does it have many side effects???????????? If so, I hope you are hanging in there. I have read also that masto can attack the CNS system; isint that the same as the spine?????????? My memory etc is a mess. But I am venting for sure, and I hope anyone who reads this is feeling ok. So in three weeks I will have more to tell. oh yeah the heat with me too I get severe break outs, dizziness, etc. I can go in the pool but not the spa. showers can not be too hot. The epi pen, Dr's written orders within medical alert bracelet I will be looking into also. (I seen these bracelets on the internet somewhere) They have really nice ones that actually hold a Dr's order of action in case of trouble. take care, God Bless too!!! Summer in California.

Johnster
07-14-2005, 08:08 AM
Summer,

You know you can count on me for prayers and support. I see you do have many of the same problems and symptoms. I tell you besides heat watch for spicy foods as well. To they have you on anti histamines? You should be on some for the stomach and intestines such as Pepcid or Zantech. This summer I have developed a little problem in that department as well as breathing difficulty. Iím glad to here youíre wearing the bracelet and have Epi-Pens too. One thing to keep in mind is that this thing affects many people in different ways. Your case may not be as severe. Another thing is that early treatment is best before damage. Interferon and Areidia are both forms of chemo Iím on now. Not everyone needs them. Some people can be treated with anti histamines alone. My situation was severe so more direct measures were necessary. Please keep me informed and feel free to contact me with any questions or concerns you might have. If I donít already have the answer I know where to find it.

God Bless

John

summerbreeze7
07-15-2005, 08:34 AM
John, If I may ask do you have epi pens and Dr's. order in a medical bracelet??? It seems so logical to have these. I didn't know anything about them until I went to the Mastocytosis Society page. I have had stomach problems so I will for sure bring that up at my follow up. I take benadryl before bed because I was waking up with heat rashes going up my neck and on my face/chest/thighs (not all the time, but often) I was put on zyrtec and atarax a while back, but for some reason my system couldn't tolerate those?????????????????????????? strange. I was told they were two different types of hystimine blockere or something like that. I'm stressed and now I know why!!!!!!!!!!!!!!!!!! I knew eventually I would have to have the bone marrow bx, but when you have one (well.....I became releived but so anxious at the same time) I know there are treatments, but honestly I am scared because of what the Doctor said about the spine. I can actually hear noises in my spine. Grinding/ moving around ( the discs I think) I almost feel like they are gong to totally just crack or move out of alingnment????? Does that sound realistic????????????????????? I am a strong person, but this is one big dx. (I will find out sure soon) I will probably find a support group or something. Emotionally it's hard. I have given my family print outs of dx. and it's many symptoms, but....................they just don't realize how much I am screaming on the inside. I stay as busy as I can on good days, and when the fatigue sets in I'm basically finished. Maybe some reading or music to calm me. I know my family loves me and I don't want to reinerate to them all the time. I can't do what I use to even five years ago. So which ever type I have is progressing. I really enjoy my good days for sure. But I pace my self and save my precious energy. I wish you all the best. I'm just wondering if it's o.k. with the board of course.....to ask you'r opinion of what the five most important questions I should ask at my follow up????? I know you are informed and educated with this disease. You really have done your homework!!!!!!!!!!!!!!!!! :) With the meds you are on are they something you stay on????? Do vitamins/supplements etc. help you out??? I know I vented again, but to who else?????????????????????? :) take good care, and I will let you know about the epi pens/ medical bracelet/meds etc. I also will be going to other search places for more info. take it easy, and know that people are thinking of you and do care!!!!!!!!!!!!!!!!!!! Summer

Johnster
07-15-2005, 05:38 PM
Summer, :wave:

I really appreciate you coming to me and hope to help you in all ways possible with a better then most understanding of what you may have and what you may expect. Even things you wont find in literature. I still hope you donít have systemic masto, but if you do you will be O.K. The reason I offer my friendship is this. Even if you only have this in the skin or the cutanious form it can be overwhelming for us at times mentally too. You become scared and find that even most docs never heard of this before. Your life may have up until now seemed normal and were in pretty good health. Now you are hit with a disease with no cure or exact meds to make it go away. Where itís studied at all it is with very little funds from donations. No one cares because there are too few of us to make money on it. You hate the fact that you are vulnerable and at any given time as you described, it can come on in and invade you like some kind of a criminal in your home. You canít call anyone or do anything about it. IMPORTANT! You must hold your anxiety in check at these moments!!! They add to that condition and feeling. It is a fight at times. Alone is a perfect word of how we may feel at times. It isnít their fault but try to be understanding of your friends and family. THEY WILL NEVER FULLY UNDERSTAND YOU. Some will avoid you if you let it consume your conversations too often. This makes it difficult because you need to get it out. Everyone reacts differently to you. Many will not be able to look at you as much, or feel guilty, or depressed or whatever. They canít understand or know how to deal with it. It also adds more pressure to you not to be a burden. It will not help you but make things worse if you canít find others in support groups who understand and help each other too. This helps me a lot. Other people who can deal and know wile listening. You will be O.K. either way though. I know I sound a little out there but this is true and yet I stay very positive. We need to. Always look for the good things. :bouncing:

Yes there are two types of histamine blockers. H1 and H2. There are ones that are used more commonly than others but everyone with this has something a little different or different reactions. I am on common anti-histamines but because my case is so aggressive I am on two less common chemotherapies. Interferon that has some bad side effects including mood swings and depression. The other is Areidia that is a bone Cancer drug that builds bone mass back rapidly.

As you read and come to know others with this you will find that so many are misdiagnosed with this disease even when tested. Many labs and doctors lack the means, materials, or experience to properly test for systemic properly. With that you should have some concerns that your docs did the tests right if it comes back negative. My results came back sooner but they were capable and did them there. Something tells me yours were being packed and shipped to an adequate facility and they will do it right.

Discs are soft and donít grind but bones do. I want to reassure you of something though. I went to a specialist in this and am currently a volunteer of patient study. There are only a few great researchers in this country that speak at conferences worldwide and he is one of them. He told me that I was only 1 of 4 to 5 from over 200 people he had seen with this that had such severe bone loss. Also I was much younger than usual. I tell you that to help calm you a bit if you do have it. Osteoporosis in the spine can be common with this though at times yes. It is also more common in woman even without masto because woman have thinner bones to begin with. Hormones and steroids also play a major role in weather your lose bone mass and that is another reason woman are at such a higher risk of developing Osteoporosis in the first place. I am unsure but I hope that if your Dr. hasnít already had you do a bone density test I would insist on it if your tests come back positive. As far as the stomach cramps, abdomen pains, bowel problems. They are very common and becoming more frequent for me as well. Never had this problem until recently though. I am finding certain foods that are causing this and have had to avoid them at all costs. I suggest you start keeping a journal of your conditions and the triggers daily. It can help you. I started mine too late but it is helping me find patterns and things that cause problems for me that might not affect you or others. No one may ever suggest this either but I have purchased a blood pressure tester. Even as a teen my blood pressure was always erratic. Epi-pens are for Anaphylaxis shock, which is fainting, and other symptoms caused from blood pressure drops. Some meds and situations can cause you to go high too and thatís no good either. As for the pens. I currently have 3. One to carry with me. One at home and one in my car. Bracelets are a bit tougher. If someone found you unconscious they may not know what to do or what happened. We can become allergic or have serious reactions to certain anti-biotic or anesthetics that never effected us before. Mastocytosis is not a term most paramedics ever heard of. If your systemic you would be surprised how many doctors if even heard of it at all will ask isnít that just a skin allergy thing? Itís upsetting. Yes you need to educate yourself well and also beware not to believe everything you read on the net about it either. I bought a generic bracelet with no engravings. It came with a card to carry that tells my personal doís and doníts. On the back of the bracelet I crudely engraved myself the words ANAPHYLAXIS and MASTOCYTOSIS below. From that they can figure out what to do for you and what precautions to take if necessary.

Meds you asked about too. Yes for now I am pretty much on meds for life. I just spoke with my specialist this week and he is prescribing a couple new anti-histamines to help me breath a bit better too. I also have been on vitamin D, calcium, magnesium and zinc. Some studies show them not working on masto patients building bone mass unless they are on the other meds too.

I am sorry for this being so long. I want you to know you can ask me anything. I will try to help you in any way possible. I will continue praying and hoping the best for you. I DO UNDERSTAND! I care about you too. I feel and was exactly where you were too. Fatigue and all. As for what else to ask at follow up. I am truly at a loss until I here what they had say. I do know that it would probably be a good idea to talk over whatever treatment strategies they suggest with one of the specialists I spoke of earlier. Where ever you may have to travel to see them may be well worth it. YOU ARE YOUR OWN BEST ASSET. Your worth the trip. :D :bouncing:

Sincerely

John

summerbreeze7
07-15-2005, 08:13 PM
John, I can't thank you enough; just you explaining to me certain things has put me at ease. I have days where I think "I may not get through this" but I havn't even been to my follow up yet. I'm staying positive, and still doing the things I enjoy. When you mentioned that most paramedics even Dr's. don't know what this is; it hit me!!!!!!!!! I was at a urgent care office a few months back due to a strange rash I had on my finger after a paper cut the day before. So I was a little concerned. The Dr. asked me a few questions, and basically said he had never heard of my dx. he stepped out of his office, and I was waiting for paper work, and the nurse. After waiting a while I walked down the hall to see what was going on, and about four Doctors were looking in books trying to find info on my dx. They didn't find anything. He gave me an antibiotic and said to return if it didn't get better. It did get better but I never knew for sure what it was. He did say it wasn't a staph infection. You are right; not too many medical professionals are aware or know anything about mastocytosis. I left praying it wasn't going to get worse. take care!!!!!!!!!!!! and thanks again for your help.

Johnster
07-15-2005, 09:43 PM
Summer,



You don't need to thank me. I want to help as many as possible with this thing. You may be there for me one day too. Right? This is also important!!! Anti biotic's are usually O.K if you havenít had a problem with them before. Write down the ones that safely work for you. That's why journals are a good idea too. Anti bioticís are mainly only bad if it's necessary to be on chemo like me when your white cells could be down. Antistetics on the other hand can be dangerous. Even locals like Novocain at a dentist. I have met people on sites that have blacked out on their way home from dental work wile driving home afterward. I had a long wait at a clinic a few weeks back. I received a cut with a rusty old nail. I knew I should get a tetanus shot and I wouldnít allow anyone to give it to me until I knew it wouldnít react to not only my disease but all my drugs and chemoís Iím on. Nobody there new what I was talking about. See what I mean? You need to learn about this to help save yourself!!! I know that sounds so insane. It also causes some of them isolated feelings you can have at times. What if you did have it and reacted bad at the dentist as I said? Would you think to ask him? Would they know anything about it? Your combo will be different than mine or anybody elseís though. Some drugs or things that affect me wont you and vise versa. Novocain may be O.K. for both of us but not someone else. Thatís another thing about this disease that makes it so rough.

I love your story about the four doctors looking in books. LOL!!! You see one of the best sites and basic general descriptions was on a government medical site. What struck me funny about it is that they said it might be more common than estimated. They explained that many people might be going on mis diagnosed and mis treated for years with auto immunes diseases because it mimics them. Reason being? All mast cells even in people with a normal amount show up wherever healing is needed. When a person cuts their hand mast cells show up there and gather. Next they release histamine followed by the immune system. They are all there to fight off infections and diseases. When it heals though they break it up and go away. With masto patients there are too many to begin with. They seem to gather up anywhere they want for no reason. When too many gather in the bone marrow they are O.K. Until something wakes them up. Any of a number of triggers including heat can cause this. It cracks them open like eggs and histamine release causes itching even internally. The histamine is rough even on bones wile in the bone marrow only not to mention other places. The immune system comes as well to follow up.

Because of this and them knowing so little about it makes me wonder that if there were better ways to treat this. Would there be better ways to manage or cure many auto immunes diseases and allergies? I hope this might help you and others.

God Bless again

John

summerbreeze7
08-01-2005, 03:17 PM
Hi there, I have an update on my bone marrow bx. John, and the other posters here I hope are feeling ok. The Bone Marrow Aspirate smears and sections:
1. A few foci of small lymphoid aggregrates with CD117 and Mast Cell Tryptase positive cells present consistent with systemic mastocytosis
2. Normocellular Bone Marrow with active Hematopoiesis in all three cell lines.

3. Increase of Iron Stores ???????

4. flow Cytometric Analysis: No evidence of monoclonality

5. Cytogenetic Study (in progress)

I know what you mean now John with the Tryptase Asssay :rolleyes: about one year ago (I finally found my lab paper) at that time it read, 23.8 H
Ref. Range: <11.5 this was the tryptase serum only. Today my results read:26.4 H <15.8 I guess labs have different range conclusions. So my Dr. told me about a new med (Gleevec) I take 400mg. daily,and once a week have my blood drawn. So in a month he will have an idea of what is going on. This is a Tyrosine Kinase inhibitor (targeted therapy) The Dr. said he has some of his patients on it for other reasons: CML/GIST Trying to stop any progression. I know there is not a cure at this time, but there are many treatments, and staying away from triggers, and wow there are soooooo many triggers. I have found I can't have sugar now it makes me feel almost sick it's as if I can't even digest it. Thats ok I don't need the sugar anyway. I so like to have a glass of wine once in a while, but it is on the trigger list so I drink slow and one glass that is it. I have noticed the drier wines don't cause me any problems. I might have a glass once or twice a month. I am staying positive, but I really thought my tmep was cutaneous only. I think it still hasn't really hit me or I feel kind of numb at this point. So much to read about; if not informed or educated on this masto disease we could very well not get the correct care. I should have been on something else besides antihistimes a year ago. Those Dr's. never mentioned seeing a hematologist. The bone marrow bx. is what got things going in the right direction. A RARE/ORPHAN DISEASE HMMMMMMMMMMMMMM. ANY INPUT HERE WOULD BE GREAT!!!! I'm just blown away right now. I cried on the way home from follow up/results, but it's strange..... I was not too surprised.??????? I hope the humidity isin't too bad where you are. I don't even want to go outside. :eek: Hope you are having good days!!!!!! :) I guess the Dr. also wants me to have another test to make sure intestines etc. are ok. I got the appt. moved up I want to get this one over with for sure. Systemic............info please. :)

Johnster
08-01-2005, 05:35 PM
Dear Summer, :wave:

I thank you so much for responding as I prayed for and anticipated you coming back with word one way or another. You are learning so fast and that's GREAT!!! Summer I am here for you whenever you need a friend that can understand. I remember trying to convince you earlier about all this. I am sorry and know all the pain and discomfort you are going thru right now. I had to fire my Hemo doc recently and find a new one who listened to me and took me more serious. Itís been about 7 months and back to tests again for me as it should be from now on. Went for another marrow biopsy Friday and had more bone scans and barium CAT scans this week too. ďLower GI checking intestines and stuff as you say.Ē By the way I didn't but you could have a reaction to dyes or barium according to studies so you better search on it and let them know to watch for that too when you go.

The heat here has been unbearable. We are also in a drought so I basically been a prisoner in my own home. Yes wine has given me problems for years too but is now untouchable. I canít tolerate all kinds of food that I could a couple years ago. Spicy foods have had a real bad effect on me. The other day I went to a fast food joint and found that they add something like a touch of horseradish to the mayo to give it more flavor. It doesnít agree with me either now.

As I said before, Please remain calm because our emotions trigger it too. Also I would try to talk to the doc about a BONE DENSITY TEST of your spine and legs that hurt. Take it from me. Youíre SPINE so important. I have too many times given this same advice to woman even younger than us with this and they have ran into opposition from their docs only to find that they were glad they had it. Women have thinner bones than men in the first place and the whole hormone thing helping it along too. Thatís why more women get osteoporosis in the first place. Those cells were found in your marrow and can release histamine that works at your bones. No bones are more important than in your spine if you want to talk pain and spinal cords. There is nothing to be afraid of now. If you have bad bone density now I would be careful until proper treatment could build it up again. In the mean time please be careful of strenuous exercise or heavy lifting. Ask your doc about the bone density tests and please keep me informed. I am here any time you need to talk about ANYTHING. You are not alone even though there are few of us.

Best wishes and prayers
John

summerbreeze7
08-01-2005, 07:52 PM
John, thanks for the positive reply; you don't know how much positive words mean right now especially. I took a nap after I got home, and after taking my medication (the Dr. said it might make me tired) I was more emotionally tired I think. I needed to charge my battery :) I hadn't cried that hard for a long time. You are right keeping emotions in check sounds very realistic to me. Especailly after finding out how sensitive our systems are. The medication I told you about says on the internet that it is a cancer drug. Is inhibitor the same thing???? I asked the Dr. if my hair would fall out as a side effect, and he said no that it wasn't a chemotherapy med. :confused: I will be pretty much so careful with my diet. There are so many additives in almost everything. There are also alot of good things we can eat which eases my stress just thinking about it. :) I hope all works out with your new hematologist (?) I will be getting alot of tests out of the way this week. So my next follow up will have very important info for me. "Stay in Control" that part of a song came into my mind today. I don't know who the band is :rolleyes: oh well. I hope you had a good weekend :)

God Bless You!!
Kathy :angel:

stlrock
08-02-2005, 08:02 AM
Hi Guys,

I hope you don't mind me joining in. About 5 years ago I was diagnosed with Cutaneous Mastocytosis. My symptoms ranged from a rash that broke out all over my body (hives) to chronic fatigue, bone pain, joint pain, etc. I have also had 5 back surgeries in the last 5 years. At the time this was diagnosed, I asked the doc if this could be systemic. He said no. Well, fast forward to yesterday. I have been a subject at the University of Colorado for the past month, and one of my blood tests came back at 91 ng for tryptase levels. Now they are saying Systemic and sending me bor allot of tests. If anyone wants some more info, please let me know. Also, I was just recently retired from the Air Force at 20 years and 21 days at 40% for my back.

Chris

Johnster
08-02-2005, 10:09 AM
Hi Kathy, :wave:

Thank you for sharing again. :D

Iím sorry but canít relate to your particular treatment. I am not and have not been on Gelevec. My doctors and specialists decided that it was not an option for me. I have read about it. I see and understand how it can and should work. All the theories and reasons. Apparently my specialist or researcher whose name you probably have seen had some hand in them studies as well. I hope you are one of the candidates who it can or does help. Itís funny what you say about chemotherapy. I believe it is too because you need constant blood work done to check on you wile on it. It seems like everyone sees it as something different to some degree. There are some docs who only recognize it as such if itís an injectable. Yet some even see what Iím on as mild but serious chemo. You need to keep into perspective that these guys see Cancer and much harsher drugs than you or I are on all the time. Chemo to them is going bald and having white blood counts so low that youíre at risk of serious health issues from catching a cold even. We are much better off yes but I believe that itís important that our doctors take us just as seriously. This is in a way a form of Cancer. There are cells that are multiplying that donít belong and are in over abundance. They can spread and cause damage to other areas too so in some respects it is somewhat like Cancer. We do need to take it seriously and watch and monitor everything. I started to keep a journal of my conditions and I swear it is very important. I stay positive and optimistic. THERE IS HOPE! THERE ARE POSITIVE THINGS HAPPENING FOR US NOW! The study I have been involved in and volunteered with has made me a candidate for a couple new drugs that have been in testing stages for 2 or 3 years that is working well on some pretty bad patients. Apparently my name went on a list of some of the first who would be available to receive it when released if I choose. I am extremely positive about that good news as well. Another thing I find totally amazing is that for an orphan disease I meet a new friend or another person with this at least on average of 1 every month or 2. Could this be because there is a rise in it or is it because as the government health pages say that most people may be running around mis diagnosed and treated for the wrong things? I have hope and see more people like us being diagnosed and perhaps more doctors and labs being educated because of that. You see Kathy some of these posts are pretty old on this thread, yet look at today. It looks like you and I have found a new friend and someone to join us. I am going to welcome stlrock here now as well.

God Bless you too and keep us informed. :angel:

Sincerely
John

Johnster
08-02-2005, 10:31 AM
Stlrock,

Hey welcome to the boards and this thread!

Boy your case sounds pretty bad like mine. I am so sorry you had so much trouble with the back and believe me I understand. I think my last alpha and beta tryptase levels were in the upper 90s as well. I think its safe to say you will be getting a lot of the same tests as Kathy and I are going thru right now. Some will be needed again in several months too. Have they done a bone marrow biopsy yet? If you read enough about this they say you usually need to flunk two of a few tests that could indicate it for you to get properly diagnosed. Usually that means marrow biopsy and tryptase or urine histamine ectÖ Also keep an eye on intestinal and stomach problems developing. I really donít know how much you know about this disease yet so I donít wish to bore you with what you do know.

University studies are GREAT to get into. They can help you and others with this dreaded disease later. More research and development need to done. More people need to be counted so money can be released for better and more frequent research as well.

I really look forward to hearing from you again and hope and pray all will be good for you.

Good luck and God Bless
John

P.S. You should probably ask about bone density tests too. No more back surgeries right?

Johnster
08-05-2005, 04:20 PM
Hi Kathy, :wave:

Hey need to comment on something. If your still using products with hormones such as cortisone I would stop until a bone density and evaluations are made on you. Maybe ask your doc. Especially inhalers too. Unfortunately the better ones have hormones but Iím only allowed Albuterol because it has none. I bet anything if you search ďbone loss cortisoneĒ You will find way too much. That would be for normal people and not masto patients too, so you can figure out what Iím saying here.

I went to the doc and had most my lab tests back. Now my tryptase is up to 117. :eek: They are waiting for a few other tests to come back and all are exploring the possibility of at least trying Gleevec for me too now. I am running short on time right now. I will talk to you both later.

God Bless
John

summerbreeze7
08-06-2005, 01:53 PM
John, thank you for the info. I use the (otc) cortisone creme it has helped me more times than I can count. It's the only thing that would stop the hives/itching/non sleep. I will certainly ask my Doctor about the cortisone creme and my options. I also have used benadryl topical lotion. They both help especially if I know I am going to be outside for any length of time;I have a bottle or tube in my purse. I still have the spots where I have had episodes/hives. :rolleyes: I have been on the gleevic now a whole five days. I have found (for me) I can't take it in the morning or I am too fatiqued to do anything. I tried yesterday to take it late afternoon, but it kicked in quick or something, and I felt out of it. So I think I will keep taking it right before bed. I know everyone is different it's just what will work for me (I hope) Having your new Doctor now I wish the best for you, and that you stay positive!!!! If I may ask John, how is the medication you mentioned that helps to build bone??? Is it doing just that???? I hope so. I am taking a multiple vitamin, ***, 1,000 mg daily of vitamin C. Would you by chance know what high Iron stores mean?? that's what my lab report read. :confused: :confused: I have a list started for my Doctor @ 1 month follow up (3 weeks to go) . Let us know if you do start on the Gleevic med. Curious Minds want to know :)

Take Care
Kathy

summerbreeze7
08-06-2005, 01:57 PM
oops!!!!!!!!!!!! I don't know how that red face got on my post; but it was not something I wanted to put on the post. :)

Johnster
08-09-2005, 11:09 AM
Hey Kathy,

On that Gleevec, I see that they should still have you come in and be monitored on that right? At least thatís what I have read on it. I think it can throw some of your blood counts off a bit at least until you get used to it like what Iím on. Iím sorry but I forgot. Have they put you on any anti-histamine yet? They had me try two more additional ones. Singulair has helped my breathing so much over the past few days. I have much more lung capacity for sure. Also have you had any results from CAT scans or anything else yet? Iím just interested in your treatment strategy and what meds they are also using too.

As for the creams. I seem to remember you mentioning leg pains and getting skin hives in the same place. See where I am going with this? Not sure how deep penetrating the cream is but this masto thing is not too good on the bones either. Benadryl is probably fine though. I was on tablets for a wile when they started me on my injections to counter the reactions. So far the side effects from chemo could also be from this disease. Weakness and tired is something we had before the meds so who knows? My biggest problem and most serious side effect is causing depression now sometimes. That is the first serious question EVERY doc asks when they see me. I am normally happy and optimistic my whole life. There are some moments on this interferon that are rough but I manage to pull myself out when I start feeling it. I am glad you sound like your handling the treatments pretty well so far.

I am keeping you and your family in my prayers as well.

Sincerely
John

summerbreeze7
08-10-2005, 04:20 PM
Hi John, yes I am suppose to have weekly blood tests for the first month; I think. I have gone in for one already. My doc will have four different results/numbers to share with me @ follow up soon. You are right again about the cortisone creme I never thought about it. What is kind of scary again is that the dermatologist who refered me to hematology is the one who prescribed the C-creme. Now it's strange when I think about it for the money and relief I can't say the rx (for me) is better than the benadryl lotion which is inexpensive, and for me really does work. The bone density test is on my list for sure. Also I want to ask the doc how the Gleevic med. is metabolized. The literature that came with the rx. mentions a serious side effect; yellowing of the eyes. which I think that means the liver is not working right????? So far no yellowing of the eyes. I will also ask the Doctor to write me a rx for the epi pens and his orders/plan of treatment should anything happen. Better safe than sorry. I was also given an albuterol rx. and intal inhaler (keeps mast cells down in lungs) I have read about the singulair. I may be wrong, but I think it works on leukotriens (sp?) My son was on it for asthma. Or is it a H1 or H2 antihistamine??? I only take benadryl in p.m and Loratidine in a.m (non drowsy formula) I think I will mention to my doc which ones (antihistamines) he wants me on. I have been on zrytec and atarax in the past. My asthma seems to be acting up lately I don't know if it's the masto or heat/humidity or all three!!!! since I also have sjogrens (an autoimmune disorder) maybe you have heard of it. My opthamologist put me on restasis eye drops about two months ago; before the S-maso dx. because of dry eyes etc. it seems to help. Any way this is the doc who wants me to have a CT scan of head. I had talked with him about the pain behind eyes/face pain/jaw pain etc... I am going to talk with him soon also so he can update my chart if need be. Hopefully by mid Sept. I will have most of my biggie diagnostic tests completed. My gut is telling me that I should be on different antihistamines so it's on my list. My thyroid scan showed that my three nodules turned into one large one so I am waiting to see an endocrinologist for options on what to do with this master gland of mine :) I am glad the singulair is working for you!!! I may have asked you already or Chris, Do you get headaches or pain in the upper most part of spine????? Just curious. I hope you don't!!!!!

keep us posted!!!!
take it easy, Kathy

Johnster
08-10-2005, 06:20 PM
Hi Kathy,

I tell you itís so good to here from you any time. You have such a good and positive attitude and I admire your strength. Iím also surprised at how quick your catching on to this in such a short time.

Yes they probably are checking liver and white blood counts for a wile like me on interferon. Soon as they see if youíre tolerating it they will go to once a month. O.K. I will tell you the anti histamines I am on right now and why. Allegra 180mg once a day, normally in the morning. Famotidine or Pepcid 20mg twice a day. This is to prevent mast cell damage to stomach or intestines, which is most typical with this disease. Singulair 10mg once a day for the breathing. Those have opened my lungs up big time. I have started taking those later in the day and am ignoring the zyrtec or I am nothing but lying around falling asleep all day. I never realized how seriously strong and damaging histamines were! I was only allergic to two things in my life that I avoided and they never showed on tests either. I though histamines had to do with those people who get stuffy noses and scratchy throats. I had no idea they could eat something as hard as bone like crazy. If you read anything good about this it is kind of like an allergy, yet kind of like an auto immunes disease because they trigger immunes system too. And they even call it kind of like cancer. Cells are multiplying too many that are not supposed too. Thatís why some departments like Chris and the V.A. are having trouble. Which category is it already? It isnít the mast cells themselves that are damaging but the overabundance of histamine released when they are triggered. Antihistamines for us are important to keep the damage down when they do release.

Yes I get the dry eyes thing too. I do know what sjogrens is and suspected I had that long before this diagnoses. Funny thing is that sjogrens is never found in a person by itself. It normally accompanies another auto immuneís disease like Lupus or Rheumatoid Arthritis or something like that. I swear if they would do some study into this they would find some better treatments and cures for auto immunes diseases and allergies too. Hmmm.

Heat and breathing difficulty!!! Thatís me for sure. I have been in denial for years about asthma until I went to my researcher and was properly diagnosed with mild grade. Some doctors say they donít have anything to do with each other. I SAY THEY ARE WRONG!!! NOBODY can tell us anything about this that we donít know better because we live it. You will find as I do that winter months are much easier on us. Heat is bad for us we know but so is the bacteria and mold that may be forming in our A/C systems. Also search engine mastocytosis asthma or something. One of those national asthma societies is saying they now believe that mast cells may be playing a role in the cause of asthma in normal patients. That is with people with normal amounts of mast cells. Why donít they study this thing to help other things too? No money interest???!!!

As far as headaches in my upper spine. Funny you should mention that. This has been my worst summer heat trigger episode ever. Pain behind the eyes face jaw ringing in my right ear. My head sometimes feels swollen and dizzy. You know the feeling you have when you drink too much? Your head hurts and you feel dizzy like the spins? The face and heat sweat machine comes on and you have difficulty breathing. You get sick to your stomach? I get to that point where most would just before they throw up including the neck pain but thatís as far as it goes. I mean if I was truly drunk I could throw up pass out and be over with it. Instead this goes on for hours and has become frequent if I donít stay out of the heat. This has gotten more frequent every year. As far as possible other spine pains. I am on a cycle. No one believes me on this either. With the exception of 10 broken vertebrae and multiple pinched nerves my back, pain still starts to get more tolerable in about a three-week cycle. It finally starts feeling somewhat better than it starts to itch again. No cutanious or skin masto but internal. I start backing up to doorways to itch up and down my spine center. A day or two later I am in pain walking around stiff again and hear and feel little cracking noises. This cycle is becoming routine. That itching is from the histamine release like someone with hay fever except mine is in my spine or bones not my nose. You see what I mean? I think I will be fine if I just move to Alaska and build an igloo HA HA!!! I see you live in California. I live near Chicago. I used to look forward to the summer. Still do. I just dread feeling this way any more. I have it so much better here in the winter including the breathing. This year we have a drought here. I can count the times we had rain since March on one hand so that Iím sure has something to do with it.

Thanks for your response
Your Masto Buddy :D
John

summerbreeze7
08-12-2005, 08:01 AM
John, I forgot to mention that what you informed me of regarding surgery in Masto patients; I read up a little more about it, and now I know what I need to do if my endocrinologist suggest lobectomy or bx. of my thyroid. I really need to make sure the whole surgical team is aware of what potentially can happen............Anaphalactic Shock!!!!! So for me to get this thyroid thing taken care of (more reading for sure for my list of questions) :) I was told what could also happen if you don't get you'r thyroid hormones in check, and I don't want that to happen. This autoimmune thing sjogrens may be the culprit. My thryoid is under attack; unless the referral goes through quickly I am really going to have to keep things in check!!!! Talk about stress (LOL) so that is my little story on the Master Gland. Autoimmune/Masto Geeees!! give me a break. I may go to the Mastocytosis Society meeting in October; I am going to read more about that. I think it would be an interesting/educational time for sure!!! To hear these top Researchers etc. talk about what they know etc. would really help I think just to be around them and to hear their voices of expertise. Hopefully get a chance to talk to some of them would be nice too!!! There is soooooo much info on these search engine places too!!!! I hope you are not having too much pain in your back. I had severe lower back pain last night!!!! I thought it was getting better. Also the bone scan info.... I read more on that too, one of the articles explains how a bone scan is different than a bone density test?? I had the bone density done a few times about a year ago, and it only took about 1/2 hr. Now I know how the bone scan give alot more info on what is going on!!!!! That is at the top of my list.

Take it easy
Kathy

Johnster
08-12-2005, 02:30 PM
Kathy


I see you are turning into an incredible research master!!! I am sooo impressed. I have toyed with the idea of going to those meetings too. Maybe I will one day if I get my life and finances back in order. I have so much hanging in the balance right now. If your not careful you might just find yourself as an additional researcher expert or at least someone like me who is dedicated to helping as many with this as possible. Donít worry Kathy. We will all get thru this one way or another with each otherís help too. You know I am a little concerned about that thyroid thing. Thatís a factor I never considered before. I know so many people who have had all types of thyroid conditions. Normally they are medicated and not removed now days. Yours sounds a little different though. You know I have had and had found other less important things in CAT scan reports and MRIs that they found and reported as cysts, scar tissue or other possible speculations of what they were or what caused them. What bugs me about this and it seems nobody can answer is, ďif this thing is so rare how do people reading these tests know what to look for and what is normal and what may be getting caused from the masto?Ē You know what I mean? I talked to a guy on his late 20s about a month ago in Austin Texas. They found out he was systemic week after having his Gall bladder removed and he was having tons of problems in the heat down there. So I ask him was his Gall bladder a normal removal or was it possibly from having problems as a direct relation to mast cell infiltration to it? He said no one ever thought of that before. When he asked the doc they kind of wished they knew a head of time so they could possibly did a biopsy on it. Then two more people come up with similar stories about gall bladder attacks and finding masto later. You see what Iím saying here. If I were you I think I would search engine thyroid masto or something. See if anything has ever been found with that.

Listen, I have to go for now. I will talk to you a little later.

Sincerely
John

Johnster
08-18-2005, 09:52 AM
Hi Guys!!! :wave:

Boy do I recall as you said how I felt relived that I had a diagnosis as well!!! Especially after several years of tests then brainwashing me as a hypochondriac. :eek: Yes I was and sometimes am upset with the diagnoses but itís better than continuing without one or any treatment. I at least know what Iím up against. Iím sure you guys know what I mean.

Iím with Chris on this Kathy. Ramble away!!! Thatís what this site is for. We are just as concerned and or excited for you as you are for us. As I have offered to be here for anybody before. I'm glad that we all can be some type of support for one another here as well.

Kathy, Did they do a CAT scan with dye for the lower G.I.? Iím not sure which tests they did. Itís so good that you did your homework though now see? They say that those same tests, dyes or anesthetics can possibly one day be triggers even if they are not today too. Thatís the tough part. Some triggers can change from day to day as well. :confused:

I find that so funny too at times about educating docs and nurses when we go. They do sound very interested with it most of the time. I bet they get board every day with all the same stuff and cases and we come along and get them all worked up and excited. LOL!!! I have found a couple over the past year that have at least heard of it and get excited and say, ďThey got one!!!Ē When that happens I feel like this rare fish they caught or the winning Bingo ball! LOL!!! :D My favorite doc was this guy who said, ďIsnít that a skin thing?Ē I replied, ďNot if itís systemic.Ē At least he remembered or heard something of it. See I know you both have had episodes of cutanious ďskin mastoĒ too. I donít get that at all. I had one episode of that when I was around 8 years old. My entire body looked like a strawberry. My mom took me to my family doc and he said, ďlooks like an allergy to me.Ē He suggested changing laundry soap or foods and to think of anything new I was introduced to. In a couple weeks or so it went away never to return??? They are a bit confused that I still have no skin problems at any time because that is more common Iím guessing. They are also just as shocked that it is mostly contained to just my bones as aggressive as my form is. My diagnoses is ďAGGRESSIVEĒ Systemic Mastocytosis. This really is a weird disorder. I am so surprised that everyoneís cases can be so common or similar yet so different too. They call them different variants of this I guess.

See Kathy, I am a rambler too! LOL!!! Enough for now.

Have a safe and pleasant trip home Chris.

Talk to you both soon
John

summerbreeze7
08-18-2005, 02:19 PM
It's nice to know we can ramble!!!! LOL.... John, I didn't have any dye type testing of my intestines. Just a looksie, and to get about eight biopsies for now. The worst part of it all was having to drink the prep solution!!!!!! There is no word to describe the taste. I plugged my nose to not smell it. 4 liters, but it was "now or never" no prepping no diagnostic test for me in the gastro. dept. That would be like two steps forward and three steps back. I guess the mast cells can bother your intestines; some people more than others. I don't have a major problem in that area, but the report on the biopsies will be (hopefully) of some good news. I am finding out I may have a problem with "pain relief" I have taken esgic plus/fioricet for about five years; four of them without knowing of probable S Masto. All I knew is I had basically no life with my severe headaches. I had been to Neurologist's etc.. tried Many Meds. Nothing took the pain away, and my skin was reacting to almost everything. This was also before I was told I shouldn't take any aspirin, ibuprofen, etc. Sulfa too (big time reaction) My family was needing me, and I wasn't about to stay in bed and ride out each episode of pain. I seen a PA one day (couldn't get in with my primary Doctor) and explained what was going on and that nothing was working. Vicodin etc...just gave me the spins and didn't take away the pain. Sooooooooooo the PA suggested fioricet I had never heard of it. I asked him if it was migraine type med, and he said no that it is for tension headaches. acetopmenifen, caffeine, butabital (sp)???? Any way I got the rx filled that same day. Took two when I got home and within 10-15 min. my pain was gone, and I didn't feel hung over or spinning or no skin reaction!!!!! I have never needed more than 2-4 daily. Sometimes 6, but never more than that. I can still function, I'm carefull driving or if I'm having a severe episode one of my son's can help. Any input here???? regarding pain management?? my primary the one who is looking at me like you can become addicted is concerned. I explained to him that after all this time I havn't wanted to take the med. I take it because I have pain in my head!!!! my oncologist even said that some masto patients get headaches more than others. It's not like I have steadily needed something stronger. If 4-6 don't work I ride it out. Input if you have any????????????? I read an article about patients having the right to be pain free. Enough of me!!!!!!! You two take care.

Hanging in there!!!
Kathy:)

summerbreeze7
08-19-2005, 12:20 PM
John, I was wondering if you have had/have shin bone pain?????? I can press on certain areas of both of my shins and they feel bruised, but there are no bruises at all. I read somewhere that S Masto can cause a shin problem. I know I've had back pain, but now I feel bone pain in my shoulders, spine, almost everywhere. I am going to talk to my Doctor about it, but I thought I would ask you. I know we are both on different therapies right now, but I'm curious if this is a common symptom of S Masto?????? I hope you don't have this shin pain because as I sit here I'm thinking "wow" this is really uncomfortable!!!! I hope you are doing ok, and when you get a chance maybe you could give your opinion. I havn't been to the gym for about a week. I just feel so darn weak!!! I wan't to just push myself, but in the past I have done that (before gleevic) and was wiped out physically and emotionally afterwards. I try to stay as busy as I can, but I was doing pretty good just four months ago (as far as energy) so it's hard to not be able to work out. I felt better working out. I may try and do some walking, and see how that goes:)

Take Care
Kathy

Johnster
08-19-2005, 06:34 PM
Hi Kathy, :wave:

Itís always good to here from you. I think I might check into that stuff your using for the headaches soon. Iím unsure if it will help me with mine. Iíve just noticed they can come in an instant like a nerve shock from my neck to my head. It happens when I move my head a certain way and direction. :eek:

Boy can I relate to the shin thing. That one can be rough too. Hard to walk even. Whatís funny sometimes is that just as fast as some of those pains can come they just one day can disappear too. ďI thinkĒ it may depend on how many cells there are in any given area. It probably also depends on how thin the bones are in the beginning in the first place. One thing I noticed that might be harder for those with cutanious masto. Some of these docs look at me like Iím nuts but I tell you I can tell a day or two before I have bone pain somewhere. That area starts to itch a little frequent. Not as much skin deep but deeper. Even my spine. I canít itch it enough on doorways or whatever. A couple daysí later, pains and popping noises. You know we sometimes relate itching to healing in everybody. Reason being is that we heal as a result of histamine release and auto immunes system. People with allergies and hay fever get itchy noses and eyes from histamine release there. I noticed since keeping the journal that most of but not all of the time I can predict the bone pain after the internal itching thing.

The exercise factor. As you know Iíve never did Glevec, but interferon is seriously draining too. I mean I felt myself getting bad over the past few years before the masto diagnoses but now I feel useless at times. Iíve also started having blood pressure issues shortly after meds. I became a little concerned when I found that exercise could be a possible trigger too. With all that and the bones in my back I have had to lay off a bit. I mean I am conscious of not becoming furniture. I do go out to air conditioned malls or if my back is too sore I find a place with shopping carts so I can use them to support me for brisk walking.

Sorry Iím all over the place. I am a bit tired today. :yawn:

Talk to you later :)
John

summerbreeze7
08-20-2005, 08:06 AM
John, thanks for the reply!!!! I think I have the thing you talk of regarding; a burning electric type zap across back area. I think you mentioned that a while back???? I have been getting the stinging/burning type pain across my shoulder blades for about three years, but assumed it was one of my discs the report stated I had something going on at certain spinal levels. I didn't think to much of it, but now my spine/bone health is at the top of my list. I may call ahead of time to ask if my follow up can be more than ten min. hmmmm ????? I will have so many questions. I want to know how this gleevec is metabolized etc... what I can take as far as maybe having more energy etc.... This may sound strange but before I was offically dx. I had been walking more, going to gym etc.. Long story short LOL....I was told about this serum that helps your muscles to not fatigue so soon during work out. I tried some and I really did notice a difference. I don't know if it will help now that I am on gleevec med, but I got it at GNC. It's nautural, and it doesn't have stimulants etc... something about the lactic acid and it helping in that area. It's not cheap and when I purchased it I had asked alot of questions first. Muscle something......I will ask my doctor if I can safely take that and get his input on it. I am sorry the interferon ? makes you fatigued I can kind of relate; even if I am not on the same therapy as you. Has it been suggested to you to add any thing to your therapy that would help (even a little) as far as energy is concerned???? I'm just wondering if anything besides the big guns of medication can be taken to help us feel better (of course without interacting badly)!!!!! I hope you feel better, and you have a nice day/weekend!!!!! Nice "long story short huh" LOL oh yeah I seen the movie Four Brothers last night, and I thought it was very good. It is a little violent, but very good anyway. I don't know which types of movies you like, but if you havn't already seen it; you should try and go!!! It took my mind off things for a while anyway:)

Take it easy
Kathy

Johnster
08-21-2005, 11:01 AM
Kathy,

I tell you what. You are so right!!! You do sound like you may be experiencing some bone problems. I would defiantly take it seriously. I will sincerely pray for you that they never get as aggressive as mine. Optimistically and statistically for you those chances are slim, as I have said before. Take it from me. Iím sure Chris will agree as well. You want to protect that back and spinal cord as one top priority. It is also a double edge sword in my case. The ďtheme of my own personal treatmentĒ seems to be ďcontrol it and contain it to the bones.Ē Bone mass can at least be re grown and some other things cannot. Yet Vertebrae are important for many reasons. Mainly because they protect and contain the spinal cord too. You see with me personally, it was important that I was tested 100% for everything and every organ that could possibly be affected. Afterwards evaluations for treatments and a specific ďtheme for treatmentĒ or battle plan or whatever you want to call it. I would not take one drug or do one thing until all the information was in and we all had the same plan or ďtheme for treatment.Ē

Another thing I hate about this is all the rules changing for us too. If I were you I would go to the masto society web site and type Gleevec in their search engine and see what you come up with too if you havenít yet. I am finally getting thru to some of my docs that all the rules are off when it comes to people like us on meds designed and studied for people with completely different illnesses. Interferon too was and is used primarily for only some Cancers and mainly Hepatitis. Now I have recently tried to start a thread in that section asking people who take it about their symptoms. Problem is their symptoms were and are different than ours in the first place. They have a virus in their blood and possibly livers and we donít. They also donít take anti-histamines and we donít take a couple other drugs they do. Iím afraid all the studies from the drug companies too are right out the window for us. Itís like trying to find a way to use your car as a boat that will also cut your grass too or something. I find the best place to find what specifically happens to us in relation to what we have including meds is from others like us and from the masto society web site.

I have to go for now. I hope this helps.

God bless
John

P.S. Thanks for the advice on the movie. I find it funny how I was thinking about going to one the other day too but all there was playing was Willie Wonka and the penguin movie near me. LOL!!! I will watch for that one.

summerbreeze7
08-24-2005, 08:33 PM
Hi John, I hope you are doing ok. I did search "gleevic" at the Mastocytosis Society page, and the information that came up was amazing; in the fact that there is alot to read!!!!! Just trying to take in some of what I read was overwhelming, but it's a topic I do need to read. Especially with my one month follow up here. It's almost as if I don't know where to start; I usually just make a list, but now it's like I need an assistant just to help with what is important to put on my list LOL!!!! I will be able to put my list together. I guess I just want to make the most out of my appt. I am putting my health in my Doctor's hands, and it's hitting me how much I really need to pay attention to. Like my Doctor said on August 1st. "there is no cure" but we can treat, and try and put the S masto in remission" I know this could be alot worse. I will be going to "search" often or I will really just feel lost. If you don't get information; it's like "giving up" and I don't want to do that!!!!! I feel like I could miss something if I don't read, read, read,!!!! There was one man who was on the board of Masto Society, and he gives a huge list of articles etc. regarding Masto. I will have to go back and do some digging!!!:) I had an x-ray today of my left clavicle. I noticed a difference the other day; my right clavicle at the end closest to your throat felt normal the size of a marble I guess that seems normal compared to what my left clavicle felt like; it literally feels like there is a golf ball size hard bump on the area closest to the throat. So my Doctor (for thyroid) felt it too; and he ordered the x-ray. So I will find out what that is all about at follow up also. Hmmmmmm my list seems to be getting a little longer:) Any way; it looks like I may be having surgery to have the nodules removed on my thyroid. The Doctor went over all of my options, but my gut was telling me the only way to totally r/o cancer is to have them removed and tested. The Doctor did agree and said that thyroid cancer is rare; especially with my lab readings etc.. I told the Doctor "I am a Rare Bird" I will ask my hematologist/oncologist his opinion. The surgical team (if I indeed have the surgery) will have to be informed of my S Masto!!!! I havn't had surgery since I was diagnosed. I will post after my follow up. so you take it easy John and I will talk to you soon.

Kathy:)

Johnster
08-24-2005, 09:36 PM
Hi Kathy, :wave:

Thankís so much for the follow up. I see youíre finally on the right track now!!! I wasted too much time before I found that site and Dr Akin. If you noticed he is one of the Guruís listed in most of the studies too. You should look him up and E-mail him about the thyroid condition. He may know more about the possible affects mast cells can have if they come in contact with the thyroid. This thing may have caused it or they could be an isolated event.??? Please consider E-mailing him Kathy. I became his patient because he is so responsive and compassionate. Even Chris was shocked at how quickly he responds to E-mail to EVERYBODY!

Iím not too sure I ever heard the word remission used for this. The word I have heard is controlled. Maybe Iím wrong. Also there are even more rare variants of this that cause some hemo disorders or mast cell leukemiaís and Cancers. Perhaps they can be put into remission.? I really donít know much about them though. I know with both my marrow tests they also tested for any of those Cancers too.

Iíve kept you in my prayers. :angel: All will be O.K. friend. Keep reading!!! :D
John

pyt5757
08-26-2005, 09:20 AM
I hope you don't mind my jumping in here. I have MCAD, mast cell activation disorder. I was diagnosed this past May after going almost 2 years with weird symptoms. I too felt like a hypocondriac. I am currently on Ranitidine, Allegra, Prevacid, Armour (for my thyroid), Iron, a number of supplements (fish oil, EPO, antioxidents, chelation therapy, calcium/mag, B vitamins), as well as estrogen, progesterone and testosterone.

My BMB came back negative, my tryptase was only slightly elevated this last time it was tested, but my histamine levels are high. I'm still working on figuring out all my triggers. It's weird but something will affect me one day and then not the next so it's hard to nail down any one trigger.

My ongoing symptoms are chronic fatigue, chronic diarrhea, unexplained hives, lightheadedness, bone pain (back, hips, feet, neck) and muscle weakness.

I'm wondering if there is a connection between thyroid problems and MCAD.

My problems started after having a full hysterectomy and many complications after it. However, looking back, I had symptoms for a long time.

Anyway, I'm trying to read and learn as much as possible about this disease. I'm on a few other forums as well, watching and learning.

Hope all are doing well, or as well as can be expected, with this disease.

Pam

Johnster
08-27-2005, 03:24 PM
Hi Pam, :wave:

Jump in anytime we donít bite! :D LOL!!! I have read a bit on people with mast cell disorders. I tell you this is even crazier. When someone like you finally gets a diagnoses it must be a blessing. I say that because they estimate many are walking around with any form un or mis diagnosed and when most of us have to educate some of our own doctors and lab people about doing tests right well I say it must be even more something for a person who has the bone marrow test and passes. Pam, the last I read all the guru researchers including mine is still trying to find a way and place to categorize people like you. It seems there are even so many different variants of MCADís itís hard for them to figure out where to draw the line there too. Iím unsure how or why but this thing no matter what form all has the same similarities and possible triggers. Iím starting to notice a pattern with mine that is crazy. Lately spicy foods almost always. Never before. Some days I have no problem with that now but have new triggers I never had. Only one is constant for me. Heat and sun. It kills me every time. I donít know many differences between what you may have and what I do. I do believe from what you describe have all the other risks as I do except none found in the marrow. This could mean you will not experience bone loss like some of us though. I have no cutanious or skin masto like most have. Yet mine are seriously numerous in the marrow so I am experiencing bone issues too. You know what I mean? Anyway, I am so glad to meet you and would love to here more about you and your treatment strategy as well. Thanks for sharing with us as well. :)

John

pyt5757
08-28-2005, 05:45 AM
Thanks for the welcome. It has been very frustrating getting the diagnosis. It took four long months of tests at a research hospital to finally get the MCAD diagnosis. I'm still trying to figure out what my triggers are. I have both heat and cold intolerance. I can only stay outside a short period of time in the heat (tough since I live in FL), and in the winter it's even worse. I do have some food triggers like uncooked veggies (except tomato's and cucumbers...so far), and some fruits. It's hard though because one day I can eat something and then the next day I get terrible stomach cramps and other issues almost immediately from the same thing.

I think the worst symptoms for me right now is the fatigue and bone pain. My lower back (buldging disc), hips and feet hurt almost constantly. Maybe that's whats contributing to the fatigue.

I'd be interested to know what treatments you all are on and what seems to be working for you. I'm on the ranitidine and allegra and that seems to help with the cramping, diarrhea and flushing/hives that I get. I still haven't found anything for the pain or fatigue. I may be trying a mast cell stabalizer next but I'm still research those. My doctors here are pretty clueless about the disease and I have to research a lot of this myself and then have them follow up with the docs at the research hospital.

Hope everyone is having a good weekend.

Pam

summerbreeze7
08-28-2005, 08:59 AM
Hi Pam, I'm glad you jumped in!!:) We are all learning here for sure. John was the first one who gave me a "heads up" on a few important things. When I was first dx w/ s masto; I was a little stressed (even knowing deep down I have probably had this for a while) but hadn't had the official dx. My BMB is what I needed probably a long time ago. I had been to every kind of Specialist for sinus problems, vision, headaches, joint pain, muscle weakness etc.. for about 10 years. I was put on numerous meds for what many of the Doctors thought I had. Depression med, muscle relaxeers, antinflamatories, Anyway......................I eventually went off of all of those for either breaking out in hives (finding triggers) to just not being able to tolerate the side effects; especially taking something that was for something I didn't have. I was frustrated, but not depressed, irritable due to not sleeping because of joint/bone pain. It's been a long road, and I am really glad I found this forum. I know we will all learn from one another here!!!!

Take Care:)
Kathy

summerbreeze7
08-28-2005, 09:29 AM
Hi Chris, I hope you are able to get things worked out with disablility; I don't know too much about it, but I have heard stories where you are denied, and have to appeal. You are probably doing this already, but if not get copies of all lab reports, copies of everything relating to your S masto. Even Dr's. notes. that might seem extreme, but a friend of mine had some problems with the disability situation and the person helping to put her case together is the one who mentioned Dr's notes. When she requested them and indeed got copies.........she realized the Doctor hadn't been writing certain things she had told him (symptoms etc) therefore the reason for the Doctor prescribing a certain Rx. which down the road for legal reasons or what have you. You need copies of everything!!!!!!!!!!!!!!!!!!!!! It can't hurt. Maybe John would agree with me about copies??????? For you just to have them will make you feel better (I hope) it does for me. It get's to a point where you end up with so much paper work etc... one piece of documentation/dictation might be of big help to you when you least expect it. I am not an expert, but we "all patients" need to really have back up is what I am trying to say. Maybe a paralegal can help you or point out what you can do about the disability. You hang in there, and make these Doctors here you. It just seems that if a certain Doctor is prescribing medication to you that they know your diagnosis sooooooo they shouldn't be afraid to take the bull by the horns!!!! I think alot of Doctors are maybe afraid of being sued?????? I have heard that alot. The more they do the more they are at risk. You have rights, and maybe you can get more help also from the Doctor who did you'r BMB???? If they are giving you a dx. then they should know the symptoms. Some patients get severe symptoms, and some just mild things here and there. Don't settle for them passing the buck or whatever it's called :)

take it easy:)
Kathy

Johnster
08-29-2005, 11:12 AM
Pam,

I have a rather large group of friends I keep in touch with internationally with this. I tell you I often wondered if I would even here from a person from Florida. You are the first. I canít imagine and can only speak for myself. The reason I always wondered if there were anyone there is I thought for ME that Florida would possibly be the worst place in the whole country. Cold is not as bad on me as heat and direct sunlight. Humidity can probably literally kill me. I have somehow over time developed mild asthma. When I read of discoveries on how mast cells affect asthmatics of normal people I see why it is working on me only recently. Hot dry air is bad enough, but humidity and some of the mildew or mold that can be associated with it. All I know is it suffocates me too. Equally as frustrated as you is a young man I met a couple months ago in Austin Texas. The heat is rough on him too. He does have dry heat though. No humidity.

Iím afraid you may be chasing your triggers for good. If you read a few pages of posts back you will see that I recommend and keep a daily journal. I thought I would find all my triggers as well. All I found was what I have read about it. They change a lot. The only one that is constant for me is heat and sun. All the common ones are there sometimes and sometimes they go away for good. My theory is that it might be because many factors including weather or a mixture of two triggers at the same time for it to work. I know this sounds confusing but itís my guess.

As for your treatment. I know nothing about ranitidine but am on Allegra 180mg. I am on something that sounds like your drug called Famotidine. That is the generic form of Pepcid and is an anti histamine helped to control problems in the stomach and intestines that are common with most mast cell disorders. I am also on other anti histamines as well. One called Sullair, which is helping with my breathing in this humid air and helps me not need an albuterol inhaler any more. If you have read on a little earlier about me you will also find that I was diagnosed ďAGGRESSIVEĒ Systemic Mastocytosis. This has also made my case need some chemotherapy treatments with injectables and other misc I.V. meds. These are some things that are only used in more severe cases like mine.

If you were having bone pains and problems I would recommend you get a bone density or similar tests done. It might save you a lot of pain and heart ache later.

God Bless and Prayers
John

Johnster
08-29-2005, 10:00 PM
Kathy!!! :wave:

Most of your news sounds good so far!!!!!!!! :bouncing: I am so sincerely happy for you so far! Hopefully all your visits will keep getting better! :D I seen your description to Chris and I know you know the real game too. LOL!!! Hot potato! :D I have so many prescriptions from so many docs LOL!!! "Oh well everything I am giving you causes high blood pressure so you have to go to your fam practitioner for meds for that." "I will give you high blood pressure meds but am recommending you see a cardiologist!!!" LOL!!! If I let them I will have a staff of an entire hospital when itís all over. LOL!!! Just like you need to see a nutritionist. LOL!!! You know Kathy; I donít remember you telling me what kind of Dr or Drís your seeing right now. Are they Hematologists or endocrinologists maybe? The reason I ask is that I started to ask my family doc about bone density tests and referrals for bone specialists if other problems were there. Your treating doc you are seeing now might refer you for bone tests anyway. I would still look into it. As for him saying ďitís not indolent because of bone pain.Ē I would be concerned with that statement. I could be wrong but thought I read that a very small amount of people are ďnot indolentĒ meaning both cutanious and systemic cases. The question I would probably have asked is was it with an associated hematological disorder or mast cell leukemia?

You keep us posted on your great news! Stay cool and keep out of that humidity. :nono:

pyt5757
08-30-2005, 06:40 AM
Hi everyone. Dave, you're not the first person to ask how I live in Florida with this disease. Actually, the sun and heat don't bother me as much as the cold does. That could be because I'm hypothyroid and tend to have low body temps, blood pressure and pulse rate. Who knows, right? I've learned that everyone is different with this disease. My biggest triggers are bugs. I went to dinner in May at a restaurant on the beach and we had a table outside. I was bitten by one mosquito and broke out in hives all over! It was a nightmare. It took almost 3 weeks for them to go away. My food triggers cause stomach pain, bloating and diarrhea.

The Ranitidine is generic Zantac, so I'm on the H1 and H2 blockers. Are you on a mast cell stabalizer? I've been reading about those lately and wonder if it might help with the bone pain and brain fog. I'm also going to call the doctor about a bone density test. That's about the only test I haven't had yet.

Thanks guys, it's nice to know we're not alone.

Johnster
08-30-2005, 08:14 AM
Pam,

Funny thing you are just the opposite with heat. Good thing for you. Heat and sun may affect Kathy and me more because we developed breathing problems or asthma from this too. Hot humid days for me is like running uphill and then trying to breathe through a towel or piece of cloth. I canít inhale enough air. I know heat not ice activates mine. Before I knew what was wrong with me or what to avoid, I would go to hot tubs or hot showers to help the aching muscles and joints. During this I would feel it start itching severely up my spine and before long I started crumbling and crunching like a piece of soft chalk making it worse almost instantly.

I bloat and have all the issues you do from my food triggers too.

As for the thyroid thing I would assume nothing. You saying your blood pressure is low and you have an allergic reaction to a mosquito??? What if that were a bee, hornet, spider or something? I hope they prescribed Epi-pens for you. A lot of people with mastocytosis or disorders are susceptible to Anaphylaxis shock. ďLow blood pressure shock.Ē I have been bitten by beeís years ago but now that my masto is up I might have a much different reaction. You can pass out from other triggers too not just bites. When Iím in the sun too long I also have a problem feeling faint or dizzy. My throat tightens and I have difficulty breathing. It can feel for me anyway like it does when you drink too much and your ready to get sick with dizziness or needing to pass out. Thatís when Iím having a low blood pressure anaphylaxis situation. This does not happen to everyone though.

Well God Bless you all.
John

summerbreeze7
08-30-2005, 08:14 AM
Hi John:) As for the Doctor who is treating my S masto he is an Oncologist/hematologist, and he is awesome. He doesn't rush me around and really explains things in detail (it's me who has the problem taking it all in) even with my pen & pad on my lap!!!!????? For my thyroid problem I am seeing an endocrinologist who is also awesome. So far my "team" has been great!!!! When I mentioned the thyroid surgery to my Doctor to get his view on it due to the S masto; he agreed that surgery would be the only conclusive way of r/o any cancer that may be hiding or just beginning????? I didn't like my option for radio iodine treatment; because the nurse practioner who I spoke with after my thyroid scan said "many people have this done, and we can help you with the nodules" but then she said we can't guarantee how much we actually get rid of. So I would still be concerned that maybe something was missed. For a long time the thyroid med. Synthroid worked then suddenly wasn't working. I have three nodules on my rt. and one on my left. I didn't ask the Doctor if it was related to the masto; another thing I forgot yesterday. My Doctor did agree that it would r/o cancer for sure. I already knew I would still have to continue taking thyroid medication; I can deal with that. Many people have had the radio iodine and it has been a great treatment for them; I have had a few precancerous ordeals in the past that luckily was caught early. One was a skin cancer (basal cell) caught and treated early, but they had to take a larger than planned bx just under my left eye. They say basal cell skin cancer is very slow growing. I am waiting to find out my appt. date with the surgeon to talk about my wanting the nodules removed. Then I know I will have to talk to the anesthesiologist; thats when hopefully he/or she will know something about s masto I will soon find out. My docor also said he would figure out what exactly to put on my medical ID bracelet. I mentioned that; if I was in a situation where I couldn't speak etc.. my bracelet needs to be read as something that will be understood. Like you said John an emt may see S Mastocytosis on the bracelet and not know what it is!!! I am going to go ahead and order my bracelet (my Doctor want's me to have one) I feel like I had to remind him on that????? I feel it is so necessary because we masto patients don't know what could suddenly cause a severe reaction even if we have been feeling good for a while. Epi pens too I got side tracked at my appt. because I was going to bring that up, and during our talks; I didn't ask him about it, but medical bracelet/epi pen if needed should go together right?????????? I read about a lady who had a rx for epi pens, and thankfully she didn't need to use them, but at a football game she all of a sudden felt like her throat was closing, and she was panicking she wasn't sure if she should use one, and her friend looked at her and said yes you should. Needless to say the epi pen did it's job!!!!! So who the heck knows???? Better safe than sorry. Thanks for your reply I really needed to hear back from my masto buddy:) I hope you'r meds are controlling things for you!!!!! Are you still on interferon?????? also, the med you mentioned about bone builiding; is you'r Doctor pleased with results/improvement??? Curious minds want to know...................just know I care and keep you in my thoughts!!!! thanks for the kind reply. You don't know how much it helps to read a reply from someone who understands!!!!

Take it easy!!!
Kathy

summerbreeze7
08-30-2005, 08:21 AM
John you posted @7:14 Chicago time, and I posted @7:14 California time!! What are the odds??????????????????????????????:)

pyt5757
08-30-2005, 08:30 AM
Dave,
Luckily my doctor gave me the script for 2 epi pens. She said to keep them (the pens) with me at all times, which I do. I haven't thought of the bracelet though, and none of my docs have mentioned that I should get one. I'll have to look into that.

Johnster
08-30-2005, 09:09 AM
Kathy, :wave:

I feel for you and Pam both. I have no thyroid condition yet know so many people who do but none with masto until now. That is an extremely rough disorder to deal with by itself especially for woman and I canít begin to imagine. I also understand why you wrote a lot of things down. I understand better than you think. Anyway YES Epi pens and bracelets go hand in hand. If you pass out or not from masto, ďeven from an accidentĒ they need to know youíre at risk for ANAPHYLAXISIS. Thatís what you were able to warn them about when you went for the tests. All your past records they might find on some other computer may never show no allergies to anything. I also listed MASTOCYTOSIS below that on mine. Most hospitals have Internet network capabilities or specialists nationwide they can call and get an immediate response from in an emergency if needed with regards to Masto. I found my bracelet at a local drug store. They had blank ones too. I engraved mine myself after writing on masking tape and going over it myself. I used just those two words.???

As for some of the more important questions that you forgot about. I would not feel too bad about getting answers and soon. Donít worry about being a pest or bother. You are paying them and have a legitimate reason to have concerns and ask some questions. Maybe you could leave a message to have the doc call you back and ask the couple important things you forgot to ask. Iím sure people do it all the time, they should understand.

Thank you so much about asking about me too. Yes Iím still on the injections every other day. They have been a little rough truthfully. I go to see my new doc in a week or two to see if my tryptase is still getting higher as it has done every time. This new doc at least seems to be willing to work with Akin and thatís half the battle. By the looks of my last tests this thing doesnít appear to have gotten too much worse but it hasnít appeared to get better either. Iím not sure the docs know much about the bone mass drug except from what I tell them. New bone scans show it is still actively working on my shoulder and arm now. So to them it isnít helping with that data too. For me it has kept my back from crumbling and I tell them IT IS DEFINITELY THE ONE THING THAT IS WORKING FOR SURE!!! Yaaaah Hooooo!!!! :bouncing: I do keep telling them the treatment probably should be bumped up a couple weeks or so sooner. I get it every 12 or 13 weeks. At about 9 or 10 though I start getting new pains and small popping noises in my back again. Thankfully not as severe as the original ones. I swear by that drug with my very life. It has kept me from a very severe fate!!!

Kathy, please keep me posted about you and consider calling and asking more questions O.K? I love having you as one of my masto buddies too!!! Yes I understand and am here for you with any problems or concerns any time too. :)

Thank you for sharing with us. :D
John

P.S. Both of mine say 9:14!!! Yup we both hit post at the same exact time. Maybe we should play the lottery today LOL!!! :bouncing:

summerbreeze7
09-03-2005, 10:12 AM
Hi everyone,

I hope everyone has a nice weekend!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I'm sure the hurricane disaster is on everyone's minds, but thank God there are good people in the World helping in so many different ways. I watched the Amreican Red Cross/relief benefit concert on NBC last night. It was really touching, and you could see the compassion/hurt on the faces of the entertainers for sure. So any way...........................take it easy and make it a good weekend:)

Just a note: Did you know that all three of us John, Chris,myself are all from states that begin with the letter "C" I thought that was kind of interesting. Pam from Florida.........I know besides this masto thing we have something else in common. Who knows??? Maybe the month you were born?? Long shot here, and I will take a guess; are you born in July by chance??? What month's are you two guys born in if I may ask???????????? Curious minds want to know:)

Take it easy
Kathy

summerbreeze7
09-06-2005, 03:48 PM
Hi John!!!!!!!!!!!!!!!!!!
I hope all is well with you, and you too had a good weekend. We just pretty much hung out at home and had a bar-b-q with just the immediate family; and went to see a movie. Gas prices don't make you want to go very far for sure!!!!!!!!!! John, I may have asked you this before, but how long did you'r first bone scan take in all???? Did they use the iodine dye during your exam?????????? You may have mentioned this before, but my memory likes to leave me sometimes:)

So any way I hope you are doing ok, and you post when you can!!!!

Take it easy
Kathy

Johnster
09-07-2005, 06:14 AM
Hi Kathy,!!!!!!!!!!!!!!!!!!!!!!!! :wave:

So glad to here you had a GREAT HOLIDAY!!! :bouncing:

Had so many kinds of bone tests Iím just making sure. Bone Scan I believe was go in for a shot of dye. Leave and come back in a half hour or so. The process was pretty quick from what I remember. Maybe 20 to 30 minutes or so to do a full body one I think. I laid still on a narrow table wile some mechanical pads scanned all around and below me.That was 2 or 3 years ago. Maybe itís better and faster now? :)

Good luck, and God Bless

Sincerely
Your masto buddy John

Johnster
09-09-2005, 10:33 PM
My good friend and masto buddy Kathy

Boy your story is sounding a lot like mine. If I recall we could go look back a couple posts but I seem to remember you wisely described the other problems he would face with some docs concerning lack of knowledge, lawsuits ectÖto Chris. If you recall I have had some difficulty with this too. I must say we need to move on and find people we are more comfortable with in any case. I did the same.

I am excited for you!!! I must say any decrease found in my tryptase would be encouraging to me. Mine is still rising. I will be getting tested again next week. Iím still not sure itís working though. I remember telling you once I donít have cutanious masto. Last week some tiny red freckle like spots appeared for the first time on my neck shoulders and a faint few on my face. They appeared shortly after a shower and are still there. I have also had a pretty rough week with everything. I still donít know about the glevec but as you see most of these drugs can have the exact same side effects as the symptoms. Thatís what annoyed me with my last doc. He assumed it was all from the meds. I have not heard of the treatment you spoke of reducing cells. That would be great once again if the side affects of the med doesnít make you the same or worse.

Iím so sorry and upset for you with that doc. What a terrible person. How condescending and uncompassionate can you be? You know I never wish bad on anybody but why is it that some of the nicest people get stuck with this kind of stuff. That arrogant guy should count his blessings. We never expected this either. Should have asked him if he was in a hurry to leave so he could hit the golf coarse with the money he earned from the last patient he took such good care of. Iím sorry but the time is different here then there. Itís going on 12:00 and I did a treatment tonight so Iím tired. I will try to write again soon.

Thank you so much for keeping me posted.

summerbreeze7
09-13-2005, 11:06 PM
Hi Frejha,

I'm glad you found this forum too:) I was dx last year in April I think, and it was called TMEP (cutaneous form) but many symptoms. The joint/bone pain you mention is what I had been dealing with for about 10 years off and on. The rashes/hives in 1988. I had seen many Doctors, they really didn't know for sure. It's been a long road, and now after finding out just after my 45th birthday this past July; that I also have systemic masto. So needless to say I have come here often. John and Chris have really been great!!!!!!!!!!!!!!!!!! I first posted I think in the Dermatology forum, but John gave me a heads up on where to go; I hadn't seen the rare disorders forum.
If I may ask, have you had a bone marrow biopsy??? I ask because that is what finally led to my dx of systemic masto; and with the blood test especially the tryptase.
I hope you keep us posted, and you are taking it easy
Kathy

summerbreeze7
09-14-2005, 10:13 AM
Hello Robin, I am glad you will be going somewhere else; where you can hopefully get a caring, compassionate Doctor who knows of Sytstemic masto. We were almost diagnosed around the same time. What is you'r current tyrptase level??? I hope you don't mind me asking; it's because I am curious due to the fact that I have been on a med called Gleevic, and it's been almost two months. At my one month follow up appt. my tryptase levels had gone down some. My tryptase was at about 21 or 23 it had been (before Gleevic up to 26) I just hope it continues to bring it down. Like John says, " We need to keep things in check" and not let stress etc. (triggers that make masto go crazy) When John told me that I knew I had to really look at the big picture and try to stay as positive as possible.
You have already had a bone scan which is something I need to have done. My lower spine has really acted up in the last three months or so. I thought it was from certain exercises I was doing at the gym. Now I know there is something going on with my spine, but my x-ray findings came back as normal. I will be getting my hands on my radiology reports etc. Also because I have noticed a golf ball size bony area on my left clavicle. Also one on my left shoulder. They were not there last month so I am going to request the Doctor explain the film to me at my follow up. I want to see the film.
Hip, knee, lower back pain, headaches are my biggies right now. Other symptoms here and there, but not like bone pain!!!!!! It hurts bad. I will also talk about my pain medication options. I received a notice in the mail for a referal to physical therapy. I will be calling today to find out who the refering Doctor was. I have seen a few in the last few months. Also to know what in particular the reason for sending me to physical therapy. If there is no reason given to go to physical therapy I will request to have in writing why I was refered.

I know I wasn't moving very well (stiff and in pain) at all of my appts. with differernt Doctors. For my records I need the reason certain things are being ordered; tests, therapy etc...and to make sure systemic masto is written down as reason etc. You never know when you will need a copy of anything having to do with sm. What helps you with pain relief??? I was taking fioricet, but have come up against a bit of a problem with that as far as not being able to take soooooooo many other meds. I have heard something about Tramadol being helpful to alot of people???????

Let us know how things go with your next visit with you'r new Doctor:)

Take Care!!!!!!!!!!!!:)
Kathy

Johnster
09-18-2005, 06:56 AM
Hi Guys, :wave:

Sorry itís been a wile. I am barely coming thru the bone treatments from my doc visit the other day. Itís pretty uncomfortable to say the least. :eek: None of my tests including the tryptase were ready yet though. I LOVE MY NEW HEMATOLOGIST DOC I FOUND THOUGH!!! :bouncing: She is starting to take a more personal liking to my case and me. They never did the genetic tests on my marrow to see if I was a Glevec candidate so she was all over the lab in a heartbeat. SHE LISTENS TO ME!!! :bouncing: As a result of that she is bumping up my treatments on bone chemo to every 6 weeks! She did not seem comfortable responding to my blood pressure comments though. Apparently since all the meds and chemo I have even been seeing another doc for high blood pressure and meds. One day, chest pains and burning with readings of 150 over 100 then a couple days later I go there and now theyíre 110 over 60? Hold onto that Epi pen. LOL!!! Nobody wants to answer that one and Iím sure you know why. No answer for it. The state of my particular case was causing some of the blood pressure issues in the first place. ďNear Anaphylaxis episodes before meds and chemo treatments.Ē Now itís more complicated. Sadly enough there is no wonder drug for this and no experience in dealing with everybodyís rare and still different unique case of it. There is still hope though. I still see more people come out of this disorder better than not in time. ;)

I will write more when I feel a bit better.

Good luck and God Bless
John

summerbreeze7
09-18-2005, 05:41 PM
Hi John,

I am sooooo glad you like you'r new hematologist Doctor!!!!!!:) It really makes you feel good when you know that the Doctor is really listening, and caring about what you say. Also I feel for you with having you'r bone treatments and you'r most recent flare/attack it is no fun when it hits you hard!!!!!

I feel fatigued as heck w/being on gleevic or just the combo of the masto and med, but I know I can't ignore what I have so it's just part of my life and as long as it is helping I really can't complain. I have my surgical consul. appt. tomorrow regarding my thyroid nodules. I will let you know how it goes. I will ask the surgeon if she thinks there is a connection with my thyroid and s masto.

I hope you enjoyed you'r weekend, and keep me posted with how things are going!!!! Talk to you soon.:)

Take Care
Kathy

Johnster
09-20-2005, 07:07 PM
Hi Kathy, :wave:

I'm sorry but I was sooo week!!! Iím still not back totally and the drugs still create brain fog as well as the masto but Iím getting better everyday.

Now how about you??? How was your appointment with the surgeon? I hope everything is going well for you. Iím still a little anxious to here from you right now. So please let us know as soon as you can O.K?

Take care
John

P.S. How is your blood pressure on these meds? I went in to see my fam doc and she is beside herself and nobody wants to comment on this one with me either. I am up and down like a yo yo all day. 150 over 100 one minute with chest pains and 100 over 60 with fainting spells the next. Some from the masto some from the meds maybe??? No doc wants to comment on that one. Now they have me trying something different for it tomorrow. I hope they get control of this soon or it wont be masto I need to be worrying about.

Talk to you soon!!!

summerbreeze7
09-20-2005, 07:35 PM
Hello everyone,

Just saying hello:) I had my consul w/ENT surgeon regarding my nodules. She was very nice and explained all of the risks involved etc... I explanined my s masto dx to her and she really had never heard of it at all. I explained what the gleevic was and that it was given to me as a tryptase inhibitor treatment.

I explained that if I go ahead and have the surgery; I will need certain percautions taken etc. due to the fact that I may have an anaphalactic episode. I will talk to my hematologist in one week so I will have time to let him know what I will be having done. This way he can inform the surgeon, etc. of what my needs will be.

I hope I sleep better tonight; we had a severe storm with thunder and lightning all night long!!!!!!!!!!!!!!!!!!!!! The thunder was the loudest I have ever heard. I hope everyone is doing ok:)

Oh yeah, I asked the surgeon if she thought this was related s masto/thyroid problems????? She really couldn't say due to the fact that she really had not heard of s masto. I know when I had my endoscopy done I felt relieved to know that my Doctor doing the exam had researched and read up on Systemic Mastocytosis. He took very good care of me. I was given benadryl along with the other two meds. They really watched me closely. The Doctor even mentioned how close his nurses would be watching my blood pressure:) he really was so caring. The nurses were great too!!!!!!!!!!!!!!!!!!

Take Care
Kathy

Johnster
09-22-2005, 01:18 PM
Hi Kathy, :wave:

Just curious. Have you considered e-mailing or contacting one of the researchers I have listed before and ask them about thyroid nodules and Systemic Masto? They speak to others and see studies on people like us all the time. They may know some do's and doníts if any do indeed exist for your surgeon. What if they are not the common normal nodules and something else that can be shrunk with U.V. treatments like skin masto. Or something that can be fixed with some other drug or treatment? I honestly donít know but either does your current doc. Do you know what Iím saying? I ask again only out of concern for you and hope you reconsider trying this.

Please keep us informed.

Sincerely John

summerbreeze7
09-24-2005, 09:27 AM
Hi John,

Thanks for you'r concern and I will let you know how things go these next few days. Email to one of the masto specialist sounds like something I should do. I just feel like everything is in slow motion with being on this medication. My concentration has been better for sure.

I hope you are having good day's!!!!!!:) I will know more after my appt. on Monday and also know that you have been in my thoughts as well, and you take it easy ok???? Have a nice weekend, and thanks for being here with your kind words, and suggestions it is very much appreciated.

Talk to you soon
Kathy:)

Johnster
09-25-2005, 06:16 PM
Hi Kathy :wave:

I understand. The meds are rough on me too. :dizzy: I know nothing about Gleevic but Interferon is brain fog material for sure!!! :eek: Tons of antihistamines can't help either. :rolleyes: LOL!!!

Hang in there friend. Most of your news has been positive. :bouncing: I was just concerned and I know you would do the same for me.

Havenít heard from Chris in a wile. Hope all is O.K with him.

Thanks for keeping me up to date.

Take Care
John

summerbreeze7
09-26-2005, 06:40 PM
Hi John,

Brain Fog is really what it feels like for sure!!!! I am glad for the good days. I also was wondering about Chris; maybe we will hear from him soon. I asked my hematologist to order a Bone Scan for me today I just hope me having to ask him instead of him suggesting it atleast; is not a bad sign??? Not that I don't think he has been great, and very caring.

So that is in the works and hopefully the referal will go through fairly quickly. Like I told the Doctor "it certainly can't hurt to have the bone scan" and he agreed. He didn't have much input other than to just put the referal through. I know he realizes I have read alot about this and the info you have given me John has really helped!!!! This nagging lower spine pain has got to show up on the scan.

I don't feel any worse sinse starting the gleevic, but I really can't say I notice a huge change. I am getting better about pacing myself and saving my precious energy:) The bummer about today is that I was anxious to hear about my tryptase level (it has been 4 weeks) and the Doctor said the lab report didn't show it; so the person who gave me the lab order had not put serum tryptase on the list of things to check. He did check me for edema due to the gleevic side effect.

I was walking down the hall after appt. and suddenly felt like everything was going in slow motion and I felt weak in the legs. I made it to the Pharmacy and asked the tech. to call my Doctor if I collapsed (I really felt that un easy) she gave me a cup of water and was so sweet she was very concerned. I didn't leave until I felt in control of my walking/balance etc. I think if my blood pressure was checked again at that moment it may have been different. ????

I still havn't gotten around to emailing the Doctor who is at UCLA, CA. (he is a member of the Masto Society Oaklahoma) I am going to call there tomorrow to see if I can get an appt. for a consul. I have a good feeling about getting this second opinion and to meet with a Doctor who knows alot about masto.

Thanks again John for being here with your knowledge and friendhip:) I have found real support here!!!!!!!!!!!!!!!!!!!!

Take Care,
Kathy

Johnster
09-27-2005, 01:40 PM
Kathy!!! :wave:

You are doing fine. I would invest in a blood pressure kit friend. Mine is all over the place every day. Invest in a piece of mind with it at least!!! I know your problems and concerns friend. I truly understand you so much. They will never understand as much as we do but we will help save ourselves with people who ďwill listenĒ!!! If I were you I would talk to the guy your speaking of and the others we listed too. Listen friend you owe it to yourself and your family to get a second third fourth and fifth opinion!!! Most specialist RESEARCHERS of this E-mail everybody back by NOW!!!!!!!!!!!!!!!!!!!!!!!!

Iím also glad you are staying persistent with that bone thing. It really isnít all as common to be like or as severe as Chris or I. I pray all is minor for you. I canít speak for Chris but this was NOT FUN FOR ME TO WAIT!!! Biggest mistake of my life is the biggest understatement I have ever said! PLEASE PLEASE PLEASE PLEASE PLEASE follow thru!!!!!!!!!!!!!!! I say this because thru the brain fog your ambition falls off too. STAY FOCUSED!!! :bouncing: :bouncing: :bouncing:

Sincere best wishes and prayers :angel:

summerbreeze7
09-27-2005, 06:42 PM
Hello John,

Just to let you know; I have decided against the thyroid surgery. I have had a few days to think about my options and I really feel that another FNA BX will put me at ease. My endocrinologist called today and said he was going to call in a medication for me to start and I will see him again in one month. The medication is suppose to help the hyper state my thyroid is in. I don't remember the name of the medication. I will pick it up tomorrow and talk to the pharmasist regarding the side effets etc. (I know there will be some) that is in the works with my bone scan; hopefully I will be more relaxed knowing the results of the bone scan.

You keep hanging in there John!!!!!!!!!!!!!!!!!!!:) I know I will have more questions for you and I will certainly need to vent. We all need that don't we?? I hope things work out financially and things start to go you'r way. I will keep you in my thoughts and prayers:)

It is too bad we han't heard from Chris I have thought about him for sure. I don't know about you John but I have always taken a multivitamin (I don't eat the best of foods all the time) and with the s masto dx I figured it wouldn't hurt to try an omega 3 fatty acid supplement, and I take msm 3xdaily it helps with the joint/bone pain or maybe the combination of gleevic too????? I'm just wondering because of the strong medication you and I take. I'm only on gleevic but it sure is potent!!!!! I am drinking alot of water and fruit juice once in a while.

Whatever makes us feel better is worth a try. I hope whatever else you are doing to ease the stress of it all is really helping. I pray too and a while back when you mentioned the depression kicking in (if we let it) I have had to really turn my thoughts to positive and nice thoughts, so the depression doesn't have room to settle in:) I'm not saying everyday is happy and carefree but just that I am aware and Keeping things in check:) In fact when you first told me that, I thought wow John is right because if we don't it only makes our symptoms worse:( So I always remember to keep things in check because of what you said!!!!!!!!!

Is your hematologist still listening to you?????? You said she was nice and I'm just curious if you still have her as your Doctor. I am glad that I feel comfortable with my Doctor; or I would be out the door in a blink of an eye. Thank God for good caring Doctors!!!!!!!!!!!!!!!!

You take care John and know that I care!!!!!!!!!!!!!!!!!!!!
Keep me posted:)
Kathy

summerbreeze7
09-27-2005, 07:14 PM
Chris !!!!!!!!!!!!!!!!!!!!!!!

You posted now I am feeling better. I don't know much about disablility and the red tape that goes with it. I can say that once you are dx with the systmeic form of mastocytosis; the symptoms etc.... is a whole new ball game. Not to mention the stress of it all, and not knowing if you could suddenly pass out due to a sudden drop in blood pressure/anaphylatic shock etc.....Maybe John would agree that these are two different dx??????? even if someone has the cutaneous form (as I do) I felt totally different once it had become systemic; so the logic tells me that it should be treated as such.

I know that you do your homework Chris and that will help you!!!!!! Don't let them sweep anything under the rug or try and dismiss you'r dx by an MD, and all the lab reports etc. clearly showing that S Masto is not the flu!!!!!

I pray that you meet someone during this process you are going through that will really understand and help open some doors for you!!!!!! I know some of the articles I have printed out (just to try and make sinse of S masto) have listed the symptoms etc. Also what can potentially happen in the worse case scenario (hopefully not) but maybe if you have printed out any of the articles with all the symptoms etc...(maybe you have already) it can't hurt to have them on hand. Especially from these major medical centers, and the Mastocytosis Society even (they know their stuff) You have rights Chris!!!!!!!!!!!

I wish I knew more about the specifics but I do care and want you to let us know what unfolds ok?????????????? Think positive Chris and keep things in check. Make lists and do your research maybe something will turn up you havn't read about yet regarding, disability???? If it came right down to it, I think your Doctor can even help you out (come a court hearing or what have you) Or the disability board?????? Appeal comes to my mind I have heard that you have to appeal !!!!! Don't give up Chris with this ok???? keep on pushing!!!!!

Take it easy and take care of business:)
Your in my thoughts and prayers
Kathy

Johnster
09-27-2005, 07:33 PM
Hi KATHY!!!! :wave:

I am so happy you are at least postponing this surgery for now at least!!! :bouncing: :bouncing: :bouncing:

I was scared stiff for you I wonít lie. Iím just so happy you are staying focused as hard as it is. The bone thing is probably very important for you too. You are firstly a woman with thinner bones to begin with. Secondly there is the hormone thing that all women have higher risks for Osteoporosis with and lastly people with thyroid disorders are also at risk for bone loss. Now you have this Systemic Masto thing. :eek: If you find out with this and a DEXA bone density scan you are at risk you can fix it fast before the damage occurs and can't be fixed. I can tell you what you need to be on next better than any doc. ;)

Yes still love my new Hemo. SHE IS GREAT and has become very found of me!!!! :D

Thanks sooo much for being such a GREAT friend to me too!!!

God bless and I will keep you in my prayers as well. :angel:

Sincerely
John

summerbreeze7
10-05-2005, 04:43 PM
Hi John!!!!!!!!!!!:)

I am so glad you posted and I am so sorry to hear about the loss of your Grandmother and your Mother; they were probable just as kind as you:)
Alot has happened in one year for me too!!! This dx we all have and the just getting use to life in a whole new mind set. Some days I think I don't really feel like I have what I have been told I have.

Then some days are like being hit by a truck (a big one) and hits your whole being big time. I really feel for you guys with the disability issue. I don't work outside of the house and my husband and I have really sacrificed and jugggled many issues for sure; especially sinse my diagnosis and of it getting more symptomatic. I tell my husband all the time about how I have you and Chris to talk to, and he thinks it is great!!!! I tell him we three are all from the C-States:) Chicago, Colorado, California (lol)

The hard part for many years is that I knew something wasn't right, and had gone to many Doctors etc... (as you both know) so when I had to stop my training to be a Medical Transcriptionist it was hard!!!! I had put time into the whole school thing and was so excited and then something just didn't feel right be it headache, joint pain, dizziness, rash. I was good for a few days and then basically couldn't get out of bed. My son's were 5 & 7 at the time it got bad and now they are 17 & 19. It's been a long road and a little more winding than I would like.

At the same time I have learned alot and try to enjoy each day to the fullest. I have to put vacuuming/cleaning house on hold often but with the help of family it gets done. Laundry piles up sometimes until I feel strong enough to get it done. I have accepted the fact that I can't do it all and I am ok with that. I don't have the energy to stress about it anyway:)

I do have to see a funny movie or go shopping on good days:) I love finding a good deal. We have had to cut way back on spending, but we have gotten better at juggling and prioritizing. Baseball cletes for the guys or new purse Kathy????? well maybe some lipstick instead:) I wouldn't miss their games for the world. It's nice our oldest is working and it helps; he is more helpful to me than he will ever know.

Enough of me already!!!!!!:) John I hope your back is getting stronger and other issues get better!!!!!!!!!!!!!!! Take it easy too.

Bye for now
Kathy

Johnster
10-06-2005, 10:16 AM
Thank you sooo much for your kind words and strong encouraging support Kathy!!!! :bouncing:

You are such a good friend!!! :bouncing:



Chris,

Please keep us up to date with your situation too.

Thanks for being my Masto Buddy!!! :bouncing:

John

Talk to you guys soon!!! :)

summerbreeze7
10-11-2005, 05:16 PM
Hi masto friends,

John, Chris I hope you are having good days!!!!!!!!!!! I actually have been feeling pretty good these past few days compared to a while back. I just wanted to say hi and really wish both of you good health. Masto may be rare but we can still have good times and enjoy life to it's fullest:) I am going to have my bone scan soon; I think having that done will make me feel better even if something should show up.

I would rather find out something and be proactive in my treatment than wonder "what if" If I can endure a bone biopsy I can endure a bone scan:) So any way you two........what ever you enjoy doing on good days I hope you are doing it!!!!!!!!!!!!!!!!!! I know I am; I found some sweaters on sale, and saving some money really makes me feel better:) I was so excited I found my colors too!!!!!!!!!! LOL:)

Take Care ok?????
Kathy

summerbreeze7
10-15-2005, 03:18 PM
John,

I am so happy to hear about your tryptase number going down!!!!:) that is such good news. I havn't had my bone scan yet; I had to cancel I was literally too weak to drive (30 min) to my appt. My husband would have drove me however I didn't feel really bad until after he had left for work so I rescheduled, and I also wanted to check with the x-ray dept. to find out if what my Doctor ordered is a dexa scan or what. I want the most advanced type of scan done. I have had a bone density test a little over a year ago when I was seeing another Doctor for my thyroid (at that time I checked out ok)

I really am happy you got some good news John!!!!!!!!!!!!!!!! I am having a hard time with this gleevic med. I have been on it about three months now, and I think the build up in my system or the way it is metabolized is really starting to take hold so to speak. I have to force my self to do so many things that before gleevic was not as bad.

Gleevic causes edema and my face is puffy my fingers too!!!!!!!!!!! It's harder to get the heart rate up to burn calories and I feel like I will gain alot of weight on this med. I have gained 10 lbs since I started taking it:( I know all meds have side effects, but I can't afford to gain weight I am only 5ft3in. as it is. LOL!!!!! I hope the dose can be lowered; I will talk with my Doctor. I wonder how many people if they had a bone marrow bx would show high typtase levels???? It makes you wonder if other things can cause tryptase to become high??? I never thought to ask my Doctor.

Have you wondered about this as well?????? Like people with allergies they would maybe have a high tryptase too right??? But the other tests the lab did after bone marrow bx and based on my symptoms/ history etc. I guess indicates "sm" only. I am just curious I guess as to why tryptase is such the big indicator???? It all gets so medically detailed and I guess it just bothers me that I can't understand the "Big Picture" as far as to why!!!!

I am going to count my blessings instead of ~~~~stressing~~~~~~~:) I/we have to stay focused right???? Again good news John!!!!:) I learn alot from your posts and just care in general about you and your health. We are dealing with this as best we can right???? I hope you enjoy your weekend and maybe feel like taking some pictures with that new camera of yours!! That reminds me... my son let me borrow his recently and it is so nice. It is digital and the quality is great and being able to send pics to friends is great.

Take it easy!!!!!
Kathy

joojoobee1967
10-19-2005, 04:42 PM
Wow, I've been trying to read through all this but it's a lot to take in.

I don't know if this is what is going on with me or not. I will start sort of from the beginning. I started having heartburn and all over itching/some swelling around my lips out of the blue last December. Went to several dr's and got meds for heartburn and itching. Nothing seemed to help. I did 4 rounds of prednisone just to get some relief but it always comes back. I've been to derm/allergy docs and all they say is I have to many mast cells- that's why I'm itching. They also said I have Dermatographia. Everywhere I itch turns red and if I scratched the letter w that is what the scratch looks like. I also started getting these red blotches on my chest which I was told were just broken vessels. They are sometimes really noticeable so I cover them with makeup.

Today I am taking Zantac, Protonix, Benadryl, Atarax, and just switched from Zyrtec to Singulair to see if it would do anything. I still have breakthrough heartburn and constant itching.

I've also sufferred from chronic headaches for the last 20 years (38 now). Dr's never could explain that either just tension. I'm usually always tired (could be from all the benadryl) and recently started having constant neck/back pain. Really stiff in the am and I've had some aching in my calves that I told the dr felt like the bone hurt. It wasn't a muscle feeling. There are probably other things but I can't think right now. Oh yeah, was told several years ago by a Chiro that I have a degenerated lower disk. I also had some episodes where I was wheezing and ended up getting an inhaler. I've never had asthma before in my life. Had an endoscopy last month that showed acid reflux but no damage. Biopsy of esophagus was normal

My question is does this sound like Mast Cell Activation Disorder? If so, what kind of dr do I need to see/tests run? I live in Ca and have Kaiser which isn't the best.

Sorry this is so long but I'm at my wits end and I've been looking for anything to explain all my symptoms because the dr's just kind of ignore everything I tell them.

Thank you,
Julie

summerbreeze7
10-24-2005, 05:37 PM
Hi Julie

I am glad you found a place to get some info. etc....:) It is no fun having so many symptoms and having to take so many medications. I know that if I do not take my antihistimanes/intal inhaler to keep inflamation down; I had started getting irritation feelings in my lungs and so far so good the intal inhaler has helped.

I also have Kaiser insurance and don't really have any negative feelings about my care at all. My Oncologist/hematologist is the most wonderful Dr. I think. He started me on Gleevic medication as soon as my lab report came back from my bone marrow biopsy etc... Everyone has a different situation with their health care providers and hopefully you will get in with a Dr. who can do the necessary tests ASAP!!!!! Not to scare you but for your peace of mind:)

I had soooooo many symptoms for years (I think I has sm for a while) any way before being diagnosed it was hard to get through my days sometimes. Headaches/joint pain/muscle pain/vision problems to name a few. I just assumed it was other things Doctors had told me etc... Until I went in (outside of Kaiser) to see a Dermapathologist who did a biopsy of one of the lesions on my leg (maybe two bx's)??? Any way she knew what to do and started me on the antihistamines that day even befor the biopsy report came back. Zyrtec I could not tolerate at all (I tried) benadryl, and Loratidine during the day has seemed to help me.

The side effects of the Gleevic is a little more challenging, but my Tryptase has to come down it was at 23 just after my bone marrow bx and had gone done at last check up to 21 or so. We do what we have to do to get better. I think I would feel alot worse if not following my Doctors suggestions. If the gleevic continues to work (please!!!!!) I will stick with it and all the side effects.

Enough of me already!!!!!!!!!!!! I hope you get some more concrete answers and if it is suspected you have a mast cell situation going on Chris was right on about the Tryptase/bone marrow test!!!! I think John our other masto buddy mentioned a histamine urine test????? I may be wrong, but either way talk to your Doctor and if you feel your not getting any where as far as treatment (TRYPTASE LEVEL) etc.........based on that; it's my opinion you see another Doctor as soon as you can. Just to be sure:)

Take Care Julie and keep us posted!!!!
Kathy

summerbreeze7
10-24-2005, 05:40 PM
John where are you????????????????????????????????

Just wanting to hear from you:) I worry ya know:) Please check in when you are feeling up to it ok????? Hope all is well and you are keeping things in check!!!!!!!!!!!!!!!!!!!!!!:)

Hope you check in soon; curious minds are concerned and care.

Kathy:)

pyt5757
11-10-2005, 04:15 AM
Has anyone heard of a connection between Hashimoto's thyroiditis and mast cell disease? Or, something called autoimmune mast cell disease?
Pam

tracy7
12-09-2005, 11:40 AM
I have been diagnosed with this disorder.I have Systemic Mastocytosis.If you wish to contact me my email is [ please read and follow the posting rules - no emails ] I would prefer if you did email me since I am new to this site and have no clue really what I am doing.I look forward to hearing from you,
Tracy







[ please read and follow the posting rules - no emails ]

[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]

tracy7
12-09-2005, 11:52 AM
I am looking for people to talk to that have systemic mastocytosis in the form that affects your bones.I have a very rare agressive form the doctor says I am one in 1.3 million who have the type I do.So this makes it very difficult to find someone who has the same type.If any of you have this form please contact me at [ please read and follow the posting rules - no emails ] thanks for your time,
Tracy








[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]

Janete
01-30-2006, 04:06 AM
Is anybody still looking at this thread on mastocytosis?

I've been having very weird symptoms for 7 years now, but gradually getting worse.
My Dr is looking into mastocytosis, after another trip to A&E, due to some frightening symptoms. I felt funny, went VERY red, mouth swelling & tight airways, itchy palms & blocked sinuses. Then I get awful stomach cramps & feel sick. It's been happening for years, but no pattern & no known trigger. I don't have a rash, but after walking in the cold for an hour & then stopping, my legs become so itchy , red & bumpy skin & I feel sick & light headed.

I am determined to find out what this is, as it's starting to stop me from doing things on my own! AAarrgghhhhh........Any one there, as a lot of your symptoms fit mine.
BTW been tested for carcinoid & Pheochromocytoms & tests clear.

Any ideas appreciated.

mpls
05-30-2006, 08:17 AM
Has anyone heard of a connection between Hashimoto's thyroiditis and mast cell disease? Or, something called autoimmune mast cell disease?
Pam

Pam,
I haven't heard of the connection; however, I have both diseases. you? thoughts?
Michael