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Old 09-16-2006, 12:17 AM   #1
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Janilee HB User
Re: Mastocytosis

Hi, I hope it's ok to enter a question here. I'm a newbee. I have almost all of the symptoms of mastocytosis but blood tests were negitive. Doc said it was the best blood test available. Doc want's me to get skin biop next time I have bruises. A rhuem. tested me for several autoimmune diseases, which were all neg. except ANA was 1:20, he thinks I have mastocytosis. I had never heard of this before. He sent me to a immunologist. Immunologist was the one who ran the masto test.

Can someone have masto and still have negitive blood tests?

Thank you for any help you may have. This is so frustating. My symptoms are getting worse over the years and all the Doctors tell me is that my symptoms are iidiopathic, hives, anaphalaxix, bruises, blisters, etc.

Thank you again

Last edited by Janilee; 09-16-2006 at 12:24 AM.

 
Old 09-17-2006, 10:29 AM   #2
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summerbreeze1 HB User
Re: Mastocytosis

Hi Janilee,
I would like to share my story; so that maybe it can help you I was dx w/systemic mastocytosis in 2005 after having biopsy from hip area (where I had dark spots remaing from previous hives etc) after the biopsy my dermapathologist suggested I see another Doctor, and at that time I was in the process of going to another Health plan. I eventually had a bone marrow bx which determined (systemic mastocytosis) I was immediately put on H1 and H2 antihistamines;benadryl in evening and Loratidine for daytime. I see a Hematologist for this, and I am her only sm patient. I have lab work done every 3 months, and my (Tryptase level is the one that is really looked at closely) my Tryptase level is at 24, and I have the Indolent form of sm. Headaches, bone pain, cognitive problems are what I am dealing with. Some days are better that others. Recently had an MRI of my lower spine; soon to get results. Within the last four months the bone pain has gotten worse to where it wakes me up, but I can't take many pain meds. due to the fact that I am allergic; almost anaphalactic shock (I have an epi pen just incase at all times) I do take Fioricet for chronic daily headaches (for me it works on the headaches, but nothing else) everyone is different with sm, and with the meds they take (regarding bad reactions etc.) So the more you stay on top of this with your Doctor the better. I actually have had sm probably for a long time, but was misdiagnosed with fibromyalgia about six years ago, but turns out that was not the case. I see a hematologist and for now it's just having my lab work done and watching out for my triggers (for me the heat is my worst trigger; then I really have to watch my stress, I try to keep things in check but it is hard. Sometime I have a FLARE or an EPISODE which makes me basically in bed for a few days. For me also klonopin has really helped me out. I started getting anxious about my dx. etc. and suddenley started having panic attacks (never had them until my early 40's) Only you'r Doctor can advice you on what might work for you, but if you feel bad don't give up....................you don't have to be in pain, and you don't have to take a medication that you know has not helped you...........(I found that out the hard way) was told to take Prozac (which I am not against the med. for some it helps them very much) but for me it made everything magnify to where I was now WIRED with all of my symptoms; not a good feeling. I hope I didn't ramble too much; just wanted to put a little info out to you so you can talk with you'r Doctor, and atleast get the feeling of knowing you are on a positive treatment plan for yourself. Rared Diseases are a double whammy because (for me) I would find that even the specialist sometimes don't really know about a certain/new treatment etc. So I bring in information to help the Doctor so they can help me!!!!!!!!! Alot of info on the net regarding sm. good luck to you and post again!!!!!!!!!!!!!!! I would love to know how you are feeling/coping etc....
Take Care, Summerbreeze

 
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Old 10-03-2006, 11:38 AM   #3
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Janilee HB User
Re: Can someone have mastocytosis and still have negitive blood tests?

Hi Summerbreeze,

Thank you for sharing your Masto experience with me. Sorry you've had to go through so much. Nice of you to reach out to others. It really helps when you have strange symtoms that seem to stump the Doctors. Sometimes it make me feel like they don't want to deal with me if they can't find an answer. Have you ever had that problem with health professionals?

My first symptoms started about 16 years ago. I started getting huge bruses on my legs and sometimes arms. Then I started getting severe rashes all over my body. Then hives with small blisters on hands, lips, and, eyelids along with idiopathic anaphalaxis(4 times) , and stomach cramps. I also get what I call, brain fog. Sometimes feels like my mind is blocked with a cement wall and I have trouble thinking clearly. Sometimes get so tired, like a mini flu, just want to sleep. Seems like I'll feel great and then wham, Im down for a day or two.

All allergy tests were negitive and the Doctors thought I might be allergic to asprin, because they couldn't find a cause. I stayed away from asprin and NASAIDS for almost a year and then suddenly had blood blisters on my arm and anaphalaxis. I was then sent to an expert on Mastocytosis. Blood test showed negitive and he told me to take antihistomine daily. He wants me to see a Dermo next time I have the bleeding for a biopsy. Antihistamines seem to be lessing symptoms (has been 3 mos since last anaphalaxis). I also carry an epi-pen.

Other than this, my heath has always been excellant and Iam an optomistic, happy, well rounded person. My problem is that I love to solve problems and I get frustrated when I can't find the answer to this - might just have to learn to chill and accept that the answer might not be found. Never knew before that there were diseases that Doctors couldn't diagonis. Im also a little afraid that I'll just go on with my life thinking it's all over, and then have attacks that get really ugly.

Sorry this is so long but it feels so good to share this with someone who understands. Im the only one I know who has these symptoms - feel kinda like a space alian when I have to tell other people. I feel guilty for putting my husband through this, he's been really supportive and a good sport making trips to hospital.

Summerbreeze, thank you agian for letting me vent. It just helps so much to feel like Im not alone. Ok, enough of my whinning! Ha! Ha! I've read some of your other posts and you seem to be a really loving warm person.

Nice to share with you,
Janilee

P.S. please excuse the spelling errors. I feel lazy today.

 
Old 11-10-2006, 07:51 PM   #4
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DAOwebe HB User
Re: Can someone have mastocytosis and still have negitive blood tests?

I also have systemic Mastocytosis. Regardless of what the doctors think or know this is what Iíve learned. Donít give up.
Know you have the right to feel well, drag your files around; donít EVER let anyone talk you into believing that you ďjust have to deal with it.Ē Maybe no one has your answer today but tomorrow weíll know more.
Here is something that I read while researching mast cells. There is a disorder that falls under the mast cell activation category where the persons serum tryptase level (an indicator in the blood of mast cell activation) is only elevated for a short duration of time after an episode. To properly diagnose this disorder the patient is given a ďkitĒ that includes instructions for the ER, some vials for specific blood tests with instructions as to where to mail them, and a 24 hour urine capture container with patient instructions.
If I were you, I would demand a blood test for serum tryptase before you leave the ER from an anaphylactic episode. (It took about a week for me to get the results of my test so you probably wonít get the result the same day.) If itís over 20, find a hematologist that deals specifically with mast cell diseases.

 
Old 12-10-2006, 01:04 AM   #5
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Pickard HB User
Talking Re: Can someone have mastocytosis and still have negitive blood tests?

Hi,

I'm brand new here and brand new to the world of mastocytosis. My husband was diagnosed on November 30th with a skin biopsy. We are pretty sure that he has more than just the cutaneous kind but are not sure which one. He has a rash, itching, flushing, sweating, fatigue, mental confusion, feels terrible, elevated histamine in blood and urine, elevated neutriphils. His tryptase level has not been tested yet because his reumatologist/internist is not sure what he is doing. He has been on Gastrochrom for about a month. This med is specifically for mastocytosis and has helped his rash and flushing tremendously. I haven't heard either of the two of you mention it. I was wondering why? Two days ago he started bruising very, very badly on one of his arms in several places. I have urged him to see the doctor immediately. He says it can wait until next Friday when he has his next appointment. I'm worried about waiting that long. I'm not sure what is causing it. We are going to ask his doctor to send all his records to M.D. Anderson Cancer at the University of Texas in Houston. It is the only place we have found in Texas that can do the sophistocated testing that we want done to determine specifically which type of mastocytosis he has. We need to make some decisions because he is not able to work anymore and the bills are piling up.

You can probably tell that I am bouncing off the walls. It is 3:03 AM and I can't sleep. Is there any way you can tell which type of masto you have without having genetic testing done? I'm worried about my 21-year old daughter.


Pam

 
Old 01-08-2007, 02:46 AM   #6
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Janilee HB User
Re: Can someone have mastocytosis and still have negitive blood tests?

Good to hear from you. Just before Christmas, I had my 5th Anaphalaxis attack. I was taken from work by ambulance. I have been so lucky as last week I found a great new family Dr. He sent me to a new Allergist. The Allergist diagonosed me with Idiopathic Anaphalaxis. He thinks I have Mastocytosis but my tryp test in Aug was neg. Dr said it can take time to get tryp to show positve. He said he has treated 7 people w/masto in our area. He thinks it has to do with our area: we live next to a nuclear testing site. Scary. He prescribed 3 different types of anti-hystamines - I take 7 pills a day to stop the Anaphalaxis.
This last time was the first time I had bone pain in my leg. Hurt from my hip to my knee. The pain stoped every time the benadryl took effect. Have you had this type of reaction?
Can you tell me how to get a, "kit" for the tryp test to take to ER?
Hope things are getting better for you. Have the meds helped you?

Take care

 
Old 01-30-2007, 07:29 AM   #7
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Posts: 112
joojoobee1967 HB Userjoojoobee1967 HB User
Re: Can someone have mastocytosis and still have negitive blood tests?

I hope you are still posting here. I would love to talk with you as I'm going through some of the same things as you. Just had a skin biopsy and it was negative. I feel that I have a Mast Cell Disorder not Masto. Dermatologist is referring me back to my Dr and them maybe to a Hemotologist.

This has been the worst couple of years. These are my symptoms:
Chronic daily headaches 20 years
Degenerative disks in upper/lower spine
itching
dermatographism
heartburn
wheezing
bloating
easy bruising
petechaie (sp)
these are the main problems and there are more. Again, I'd love to hear from you.

Julie

 
Old 02-26-2007, 07:31 PM   #8
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Join Date: Feb 2007
Location: Las Vegas
Posts: 33
WendyHall HB User
Re: Mastocytosis

Janilee,

I don't know if your still here but I have malignant systemic mastocytosis. There is no blood test to find out if you have masto. They do a skin punch biopsy or a bone marrow biopsy. I have been thru all the biopsies and was even on chemo (Gleevec) until it damaged my liver. Life is hell with masto so I pray you don't have it. Let me know if you have any specific questions.

Wendy



QUOTE=Janilee;2559997]Hi, I hope it's ok to enter a question here. I'm a newbee. I have almost all of the symptoms of mastocytosis but blood tests were negitive. Doc said it was the best blood test available. Doc want's me to get skin biop next time I have bruises. A rhuem. tested me for several autoimmune diseases, which were all neg. except ANA was 1:20, he thinks I have mastocytosis. I had never heard of this before. He sent me to a immunologist. Immunologist was the one who ran the masto test.

Can someone have masto and still have negitive blood tests?

Thank you for any help you may have. This is so frustating. My symptoms are getting worse over the years and all the Doctors tell me is that my symptoms are iidiopathic, hives, anaphalaxix, bruises, blisters, etc.

Thank you again [/QUOTE]

 
Old 02-26-2007, 09:20 PM   #9
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Location: Adelaide,SA,Australia
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Aussie39 HB User
Re: Can someone have mastocytosis and still have negitive blood tests?

Hi I'm new here too,
I was diagnosed with Systemic Mastocytosis about 7 years ago. I agree with you Wendy it can be hell. A biopsy is necessary to confirm a diagnosis but the blood test for serum tryptase is also used to aid diagnosis. In Systemic Mastocytosis tryptase is always elevated (above 13) but because it can be elevated in other conditions a biopsy is needed to confirm. In mastocytosis that is contained to the skin (ie. not systemic) the tryptase is not always high, so you can have mastocytosis of the skin with a negative blood test.

I would love to chat with anyone with this condition and am happy to answer any questions. As this disease is very rare a lot of doctors don't know much about it I have done a lot of research and read lots of medical journals to keep myself informed and have often taken stuff to my doctors to read.

Cheers Bronwyn.

 
Old 02-27-2007, 09:53 AM   #10
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Posts: 33
WendyHall HB User
Re: Can someone have mastocytosis and still have negitive blood tests?

[Hi,

I agree that the tryptase is to help with a diagnosis. My tryptase is only elevated after the anaphylaxis other wise its just a little high. So saying masto tryptase is always high is not always true. Is your mutation in the ckit 816? or do you have normal mast cells but too many?

Wendy


QUOTE=Aussie39;2823813]Hi I'm new here too,
I was diagnosed with Systemic Mastocytosis about 7 years ago. I agree with you Wendy it can be hell. A biopsy is necessary to confirm a diagnosis but the blood test for serum tryptase is also used to aid diagnosis. In Systemic Mastocytosis tryptase is always elevated (above 13) but because it can be elevated in other conditions a biopsy is needed to confirm. In mastocytosis that is contained to the skin (ie. not systemic) the tryptase is not always high, so you can have mastocytosis of the skin with a negative blood test.

I would love to chat with anyone with this condition and am happy to answer any questions. As this disease is very rare a lot of doctors don't know much about it I have done a lot of research and read lots of medical journals to keep myself informed and have often taken stuff to my doctors to read.

Cheers Bronwyn.[/QUOTE]

 
Old 03-26-2007, 12:18 PM   #11
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chriscann HB User
Re: Can someone have mastocytosis and still have negitive blood tests?

I was recently diagnosed with TMEP, a type of Mastocytosis. Has anyone ever had this before?? What are the chances of it being or becoming systemic, and what blood test should I have my doctor take. I had been tested for Lupus for years, have complained about legs and muscle cramps and aches and even had a disk replaced due to degeneration in my neck, I now have spots all over my body... even my feet and some on my face. I currently am taking anti histamines adn they want me to do the PUVA light therapy, has anyone done this? What should I expect? I have had the spots for 3 years now, before someone did a the biopsy and noticed the mast cells. Any help is appreciated!

 
Old 03-26-2007, 07:45 PM   #12
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WendyHall HB User
Re: Can someone have mastocytosis and still have negitive blood tests?

Chriscann,

If you were diagnosed thru biopsy and its positive you have masto. I started with UP/TMEP when the spots just started show up. 4 years later I had a brain tumor and the masto turned systemic. I have had several bone marrow biopsies (bmb). All positive for atypical mast cells positive w/cd2 and cd25 which according to my docs at MD Anderson in Houston shows they are malignant. If you have found a doc who know about masto your lucky and stick with him. I was on chemo 2 yrs ago (Gleevec) and it didn't work it just caused liver damage. You need to be on H1 and H2 blockers, gastrocrom (if you can take it, I can't, I have every adverse effect from that), lots of benedryl etc if you symptoms are severe. I am on lots of meds and heavy pain meds. I think the only reason they do blood work is to check the tryptase. I also have MRI's, full body bone scans, ultra sounds of liver, and upper and lower GI tests every year or so. They do this mainly to check the progression even though it doesn't change the treatment.

Wendy

 
Old 03-27-2007, 06:05 AM   #13
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chriscann HB User
Re: Can someone have mastocytosis and still have negitive blood tests?

Thank you so much Wendy. Unfortunaltey my dermatologist knows about Masto, but my General Practicioner had to look it up in his medical journal, he had never heard of it. I have asked him to test my Tryptase level and he has never heard of the test even. I have had joint pain for years and been to multipule doctors. My dermatologist think this is unrelated to the TMEP? I also get migraines quite frequently and recently have developed an intolerance to alcohol. My regular blood work all looked fine besides my Carbon Dioxide level was low? The doctor said he did not feel it was anythign to be worried about. What kind of docotr should I be seeing to have my blood work done.

 
Old 03-27-2007, 01:26 PM   #14
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WendyHall HB User
Re: Can someone have mastocytosis and still have negitive blood tests?

HI,

I have severe bone pain in the bones and joints. I am on percacets 4 times a day to take the edge off the pain. The tryptase test is done with a regular CBC test. My blood tests come back normal except my tryptase is slightly higher and my neutrophils are always high. You can only find the mast cells from a bmb/aspirate. I have severe head pain all the time and nothing helps it. My doc said its from the mast cell degranulation of the mast cells in the brain. My doc is at a loss of what else to do for me either. I have an appointment to see a new Oncologist/hemotologist soon just to see if maybe he knows of anything else besides chemo to try.

Wendy

 
Old 03-27-2007, 01:28 PM   #15
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WendyHall HB User
Re: Can someone have mastocytosis and still have negitive blood tests?

Hi Again,

Forgot to mention Alcohol is a mast cell degranulator so stay away from all alcohol. If I have any I end up with Anaphylaxis. Also shell fish is a big trigger for me. Other triggers are extreme heat, stress, exercising.

Wendy

 
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