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Old 09-21-2009, 04:34 AM   #1
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sarayment HB User
Possible Mastocytosis-waiting test results

Hi, I'm 38 years old and have been ill since 2001 and living in the UK. I have had alot of unexplained symptoms:
daily headaches
joint and muscle pains
pain in my spine and hips
sinus tachycardia
heart burn
stomach pains like gallstone pain ( ihad gallstones removed in 2004 but the pain came back after serious amount of stress in 2006)
feel sick
vomitting
extreme fatigue
swelling
burning palms and feet
and since january cholinergic and pressure urticaria
avascular necrosis of the metatarsal head (blood supply cut off to bone, bone dies and bone collapses)

Apart from that I feel fine!!

In the uk we go to see individual doctors who specialise in their own feilds and don't speak to each other.

My dermatologist sent me to see a specialist in cholinergic urticaria who I saw last friday. He was the first person to link all my syptoms to masto. Even my foot! The Dr said that masto can cause minerals to be taken from the bones. Pieces of my teeth keep breaking off too.

The reason I'm writing is because I'm so nervous. I hate seeing specialists who so far have been "well we don't know what's causing it, oh well" attitude. Even when I was taken to A&E (ER) with my stomach pain I asked the question can Morphine make my pain worse? as my pain went fom 8/10 to 10/10 after injected. The answer has been no. I found piriton helped with the stomach pain by accident but have been looked at as if I'm completely bonkers. Trying to explain why I can't take certain meds without an explaination has been really hard too.

I noticed my triggers really early on:
heat
exercise
alcohol
certain medications
stress
lady hormones

But because I didn't have the rash nobody took me seriously. I got diagnosed with fibromyalgia and had to deal with a physio calling it a name for minor aches and pains suggesting I attended the exercise class there! In 2005 I was diagnosed with Inappropriate sinus tachycardia, again cause unknown and not completely managed on the highest dose of Verapamil which is apparently very unusual.

I feel like I'm in limbo. Excited that I may have a name that I can bat back to the dr's but also very nervous of what happen's if the tests come back negative. Is this how you felt?

 
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Old 10-29-2009, 02:54 PM   #2
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marlee16 HB User
Re: Possible Mastocytosis-waiting test results

Hi, what was your diagnosis ? I'm very interested ..daughter has strange symtoms also similiar to yours.

 
Old 11-04-2009, 04:22 AM   #3
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sarayment HB User
Re: Possible Mastocytosis-waiting test results

Sorry it's taken a while to respond. Because of my brain fog I couldn't remember my password but I finally worked out how to get a new one.

I've only had a tryptase blood test which came back at normal levels. I'm really confused now as my symptoms seemed to fit even my excrutiating stomach pains respond to antihistamines.

I am now waiting for an appointment for "physical testing at the allergy clinic"

Spottedfox, what tests did you have done to get a diagnosis. I'm so confused and apart from the specialist, no-one has even heard of it so I have no-one to ask in the medical profession where I live

 
Old 11-04-2009, 05:52 AM   #4
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SpottedFoxx HB User
Re: Possible Mastocytosis-waiting test results

Even with a normal tryptase, it could be MCAS (mast cell activation disorder).

I was very fortunate that I had an allergist who had seen masto a few times. She knew enough to diagnose. My tryptase level was 73.5 (normal being between 3-11). She then sent me for a second test to rule out lab error and a 24 hour urinalysis. Second tryptase came back at 70 and had elevated histamine in my urine.

Then I had the bone marrow biopsy. While it's a very scary test, it really wasn't bad. It was positive for mast cells in my bone.

Since then I have had a skin punch (biopsy) which was positive for mast cells (uricartia pigmentosa or cutaneous mastocytosis), CT scan of the abdomen to rule out organ involvement (thankfully it was normal), dexa scan to get a baseline on my bones and to make sure I had no osteoporosis or osteopenia (again, thankfully normal). I also had my progestaglanderin D2 levels checked which were a crazy 1241 (normal being under 240).

I travelled to Boston to the world famous Dr. Castells and officially had the diagnosis of indolent systemic mastocytosis and uricartia pigmentosa.

I'm currently taking....

10mg loratadine 1-2x a day
150mg raditadine 2-3x a day
200mg gastocrom 4x a day
325mg aspirin 1x a day
1000mcg B12 1x a day
birth control continuously (I flair from my cycle).

< edited >

Last edited by hb-mod; 11-04-2009 at 01:35 PM. Reason: Please don't post disallowed websites as per Posting Policy. Thanks.

 
Old 11-05-2009, 04:12 AM   #5
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sarayment HB User
Smile Re: Possible Mastocytosis-waiting test results

Marlee16, what are your daughters symptoms and how old is she?

Spottedfox, I've looked up MCAD and there's even less information on it than mastocytosis! I've looked through some posts here. I gather that you can have normal test results from the tryptase test and the biopsy so how on earth do they diagnose it. I've waited 8 and a half years for the answer, I thought I was a patient person but now being sooo close, I've found that I want all the answers now!

 
Old 11-05-2009, 10:04 AM   #6
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coloradygrl HB User
Re: Possible Mastocytosis-waiting test results

Hey, I have mastocytosis as well mainly in the form of UP, I only had two spots in the my life- but a few years ago when my dermatologist first saw it- she thought it was cancer and hacked it off.

This year alone I have developed 5 more spots and I am really worried that it is progressing. I had surgery recently and was on percocet for a few months and think that this triggered the new uricartia pigmentosa. I have constant chronic back pain from a back surgery years ago and horrible muscle spasms. Spotted fOX, I've heard that asprin can be a trigger as well, did your doc order you to take it? I am frightened of a bone marrow biopsy= can anyone attest to the pain level it causes?

I know my triggers are morphine, codeine, alcohol and NSAIDs, this leaves me with virtually nothing to curb my pain. HELP!

Last edited by moderator2; 11-05-2009 at 03:19 PM. Reason: please do not post websites except as described in the Posting Policy

 
Old 11-06-2009, 05:26 AM   #7
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SpottedFoxx HB User
Re: Possible Mastocytosis-waiting test results

Colorado. I'm so sorry for the pain you've been through and are still going through.

UP spreads, it's not cancerous and nothing to be too concerned with. It's just an accumulation in the skin. My thighs are covered, my calves seem to get more and more, tops of my feet too. I have some on my trunk and arms and even have some on my face (even though they say we don't get them there, I've met plenty of masto folks who do).

The reason I'm on aspirin is my Progestaglanderin D2 (PD2) levels are through the roof. This is one of the main reasons I flush so much. PD2 binds to aspirin and then flushes out of your system. If you have a big issue with flushing, they may want to desensitize you to aspirin so that you can take it. Otherwise, it's not a big deal for you.

Ok - the bone marrow biopsy. Man it sounds scary doesn't it? When I got to the hematologist's office I almost lost it. I was surrounded by people who were going through chemo for one form of cancer or another. I couldn't look at anyone because every time I did, I'd fill up with tears. Once I finally got into the actual office I was fine.

My doctor was a straight shooter (pun intended) and didn't pull any punches with me. He told me he doubted I was systemic but I needed to have it done to rule it out. I told him I had brought klonopin for my anxiety and could I take one. He laughed (gently) and said "sweetie, by the time that kicks in I'll be done".

I undressed and put on a gown. I laid on the table on my side. Worse part of the entire procedure came next. The numbing shot. Yowza! I jumped and he sprayed the wall with it ~giggle~ oops. No biggie. Once I knew what to expect, I was able to calm myself. Once I was numb, it was just a whole lot of pressure. At one point I felt like he was standing on top of me. When they aspirate the bone marrow, I swore he had a vacuum in my hip and was pulling the marrow out of my toes. I could feel the suction all the way down my leg. Then poof, it was done.

He told me to take Tylenol for the pain and wait 24 hours to shower. I had one dissolving stitch. The next day I was a bit sore. The day after that was the worst but even then it just felt like I had a really hard workout, nothing terrible. Then it slowly subsided over the next few days. I didn't even bother with the Tylenol.

Three days later he called me. "Surprise surprise, you're systemic". I asked him what to do and he said to call my doctor. I called the allergist and she told me to call Dr. Castells.

I am very blessed as my triggers are fairly easy to avoid (heat, chocolate, sesame, msg). However, they do change on me. Sesame is a new one so sometimes I'll forget. I'm a leaker, not a shocker so even when I come in contact with a trigger, it just means a day or three of discomfort.

Last edited by SpottedFoxx; 11-06-2009 at 05:28 AM.

 
Old 11-09-2009, 01:17 PM   #8
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GypsyPrincessa HB User
Re: Possible Mastocytosis-waiting test results

The discomfort you are likely to experience after the bone marrow biopsy (bmb) is less (usually) than the sensations you feel during the bmb itself. I'm allergic to topical freezing (lidocaine and xylocaine) so I had my first bmb with almost nothing (doctor decided to use a little bit...and I went into shock...oops!). Usually you get freezing to lessen the pain during the procedure. A good doctor will give you some Ativan or something too. It's perfectly normal to feel anxious about this procedure. It'll be ok.

 
Old 11-10-2009, 04:37 AM   #9
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sarayment HB User
Re: Possible Mastocytosis-waiting test results

I've now got an appointment for a skin ***** test on the 2nd December. Has anyone else had one of these?

I've got to come off my anti histamines a week before and I think they're going to put me on an exercise bike.

 
Old 11-10-2009, 08:10 AM   #10
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coloradygrl HB User
aHHH

I really appreciate all of your feedback on this. I already have so many health problems that I can't even bring myself to face this right now. I doubt I'll get a bone marrow biopsy unless I keep getting exponentially more spots on my skin. My dermatologist didn't seem too concerned, or maybe he just didn't think it was important because there is so little that can be done for masto anyways. I just saw a pain management doc. for my back and I guess I'm going to try Lyrica for a while to curb my severe muscle spasms and chronic pain. It is a non- narcotic neuromuscular drug so I hope it won't set off the masto like every other drug I take ... MUCH LOVE

 
Old 11-11-2009, 04:30 AM   #11
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marlee16 HB User
Re: Possible Mastocytosis-waiting test results

Hello, my daughter got very sick when she came off her meds for a test..she went back on them...she how has a a new Dr. who wil check her by way of blood test for food allergies.I know they say it won't work while you are on meds.. but I would ask about the blood test.Good luck to you.

 
Old 11-11-2009, 05:24 AM   #12
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SpottedFoxx HB User
Re: Possible Mastocytosis-waiting test results

Why are they taking you off your meds??? All my testing has been done while I'm on my meds. Going off your antihistamine won't do anything but make you sick. If you have UP or masto - you have it with or without your meds. The only thing the meds do is control your symptoms.

Please talk to your doctor again about this.

 
Old 11-25-2009, 03:14 PM   #13
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Mykyliem HB User
Hey all.
I am having a lot of the same symptoms as sarayment. Here's my story..
I started having headaches in July/Aug of this year. Since then they have gotten progressively worse. I have headaches daily, but some days are worse than others. My migraine meds and Ultram (non-narcotic pain reliever) work most of the time but I have occasional days in which nothing gets rid of the neck pain and headache. I saw a neurologist in Oct who diagnosed it at occipital neuralgia. I then proceeded to go to a pain management doc who did injections of steriods into my neck and occipital region of my head.

In the last 2-3 weeks my headaches have continued to get worse and I have also noticed other syptoms. I have had night sweats for a few months, and I just now thought it was worth mentioning to my neurologist. (Especially since they seem to be getting worse. i.e. drenching my night shirt and sheets) I also have nausea, musculoskeletal pain (joint and muscle pain), difficulty sleeping, palpitations, acid reflux, constant ringing in my ears and fatigue. I also have a small red/brown area on my chest that has been there for 3-4 weeks now.

I decided last week (Nov. 18) to return to my neurologist to inform him of all of the other symptoms I have had and that my headaches are getting worse. He proceeded to tell me that as I had been explaining everything to him and talking to him my neck and face got real red and splotchy. He said, "I don't think it's occitpital neuralgia, I think you have too many mast cells". So he prescribed Periactin, an antihistamine and told me to follow up in about a week. He also ordered some basic blood tests.
The blood tests were normal except my tsh which showed that I was in the early stages of hypothyroidism.
The periactin helped for a few days. However, my headaches and other symptoms got worse again the last couple of days. I followed up with my neuologist today and asked him if he could do a typtase level. He told me that he doesn't think I have mastocytosis and that I just have "mast cell hyperactivity". He thinks that's what's causing my headaches and night sweats but all of the other symptoms are from my hypothyroid. He said I should just want 3-4 weeks to let the periactin and synthroid work and I'll be okay.
After he told me last week about having "too many mast cells", I looked up information on "too many mast cells" and came up with mastocytosis. I feel that I need a second opinion.
What do you all think? If I was to get a second opinion, who should I go to? Another neurologist, an allergist, a hemotologist??? I know I can't go to my primary, she diagnosed me with tension headaches and told me to go get a massage.
Thanks in advance for any help/advice you can give me.

Robin

P.S. Sorry I rambled...

Last edited by moderator2; 11-25-2009 at 03:31 PM.

 
Old 11-25-2009, 10:30 PM   #14
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coloradygrl HB User
Re: Possible Mastocytosis-waiting test results

I would see a dermatologist about the spot of possible mastocytosis if you are concerned (especially since you've already been diagnosed with mast cell hyperactivity). When I got my first skin check at age 22 my dermatologist saw what I thought was a tiny harmless birthmark, as something that resembled skin cancer. She removed my spot the same day and 2 weeks later I found out it was a mastocytoma spot. I also have a lot of chronic body pain but I generally attribute it to a back surgery I had 10 years ago. Hopefully for you, the antihistamines will deter another spot from popping up. In the past 2-3 years I went from having just 2 small spots to having almost 10 visible spots on my chest, and one on my back. I know there is not much proven treatment out there for this condition so I try to avoid my known triggers (morphine and derivatives, heat, alcohol). I basically refuse to deal with this disease until I have my severe muscle spasms and chronic pain under control .
Happy Thanksgiving...
Hang in there, you are not alone !

 
Old 11-26-2009, 03:28 AM   #15
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sarayment HB User
Re: Possible Mastocytosis-waiting test results

I too had a nerve block which left me in excruciating pain for over a week. My headaches are in my neck and the base of my skull and I get a "crunching" noise (like crunching fine grains of glass) at the base of my skull when I move my head. Do you hear things louder and things that should be too far away to hear?

I would keep persuing it though. I'm not sure how your medical system works over there

 
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