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Old 09-01-2007, 06:46 AM   #1
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Help! Are these symptoms of Mastocytosis???

Hi,

I jumped on the internet tonight to search on itchy skin when I exercise.

I've always had really full on painful itching with exercise, mostly on my thighs, torso and stomach. I now try to go to an air-conditioned gym which helps but the itching can sometimes happen no matter what. Once I went for a run around the block and the itching was so bad that I ended up fainting on the side of the road.

I've always said that I must be allergic to my own sweat. I have just read about urticaria and mastocytosis and now little light bulbs are going off all over the place.

The articles say fainting is also a symptom of mastocytosis - but can it happen anytime, or is it only when itching? Because I have been a fainter/low bp almost my entire life. I remember fainting after being bitten by a spider, after putting on Calmoine Lotion (fainted everytime until they changed ingredients), but it wasn't always because of a reaction as I also sometimes fainted if i hit my funny bone or head.

Over the years been tested for all sort of things (its not epilepsy) and been told that I'm prone to low blood pressure and fainting. I've had a couple of fainting spells over the last month - one due to abdominal pain in the middle of the night (weird that i fainted even though i was already lying down!). So my doctor is actually sending me to a neurologist again next week. But I'm thinking maybe I should get him to test for me for mastocytosis before I go???

I was recently tested for things like vitamins and minerals, anemia, lupus, thyriod etc (all good) but one of the four tests they do for rheumatoid arthritis came back positive, although doc doesn't think I have that. I did the test again a month later, but nothing.

I also have severe pain in my wrist, which I just thought was RSI. Just stared to see a physio who thinks maybe to do with nerves, but hasn't fixed it yet..but it really feels like its in the bone. Also I have a degerertive disk in my neck, which a muscular skeletol specialist thinks is what is causing awful pain in my shoulder.

I had some weird sometimes itchy red spots on my back and side before...they appear every now and then for the last few years. I went to a doctor once who said it was probably a fungal infection but the fungal cream i used on them didn't work very well, if at all.

Soooooo....after reading all that, if anyone could comment it would be very much appreciated.

Do you think it's worth getting tested??? I feel weird going into the Doctor and telling him what to test me for......but then again, living my life in pain and fear of fainting has been alot weirder so I guess I can just talk to him about it.

Cheers!

 
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Old 09-04-2007, 05:51 AM   #2
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chriscann HB User
Re: Help! Are these symptoms of Mastocytosis???

I think it is definately worth a try. I have systemic Mastosytosis and my spots are constant. They look worse at times but I have had them for 4 years now. I too have had a degenerative disk, the shoulder pain was my main symptom, and boy did htat hurt!! I had a really hard time healing when they did my surgery to replace it. I have been to a zillion doctors. I finally had Masto diagnosed in my skin by a dermatologist and after reading other post have had to tell my family doctor what test to even do. He sent tme to a Hemotologist and he has been great! Ask your doctor to do a Tryptase level test on you. It is only a blood test and might show soemthign.
Good Luck
Chris

 
Old 09-04-2007, 10:12 AM   #3
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tammi8226 HB User
Re: Help! Are these symptoms of Mastocytosis???

I have had these spots growing on me since I was pregnant with my now 7 year old daughter. They told me at the time it was just hormones. The last few months they started growing on me like crazy....arms, legs, and stomach. The dermatologist did a biopsy and it came back a form of Mastocytosis. I saw a hematologist two weeks ago. My 24 hour urine was negative and my tryptase level was 17. I have to see him again on 10/3 for more labs. I'm terrified. I have liver problems as well that are supposedly not related (U of Miami specialists are taking care of that). I get this crazy tingling feeling in my whole upper body like I'm having a huge panic attack.

 
Old 09-05-2007, 05:54 AM   #4
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chriscann HB User
Re: Help! Are these symptoms of Mastocytosis???

Quote:
Originally Posted by tammi8226 View Post
I have had these spots growing on me since I was pregnant with my now 7 year old daughter. They told me at the time it was just hormones. The last few months they started growing on me like crazy....arms, legs, and stomach. The dermatologist did a biopsy and it came back a form of Mastocytosis. I saw a hematologist two weeks ago. My 24 hour urine was negative and my tryptase level was 17. I have to see him again on 10/3 for more labs. I'm terrified. I have liver problems as well that are supposedly not related (U of Miami specialists are taking care of that). I get this crazy tingling feeling in my whole upper body like I'm having a huge panic attack.

 
Old 09-05-2007, 06:01 AM   #5
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chriscann HB User
Re: Help! Are these symptoms of Mastocytosis???

Tammy,

Wow someone else in Florida with this.. How does the weather effect you? I am so white, I just avoid the sun! My spots are on my legs, feet, thighs,the back half of my arms, on my back and my chest and neck, I even have some on my face. None on my tummy though. My tryptase was 22.9, they just did it again the other day so I have no idea how that one came back. My spots almost look like bad freckles!! They have only recently started to itch and tingle. At night they tingle really bad when I get in bed, like a sunburn, but I take my last antihistamine right before bed and it kicks in and I am fine then. I have to go back tot he doctor this month. I have no ideas what they are goign to do to treat me.

 
Old 09-05-2007, 07:50 AM   #6
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Re: Help! Are these symptoms of Mastocytosis???

Quote:
Originally Posted by chriscann View Post
Tammy,

Wow someone else in Florida with this.. How does the weather effect you? I am so white, I just avoid the sun! My spots are on my legs, feet, thighs,the back half of my arms, on my back and my chest and neck, I even have some on my face. None on my tummy though. My tryptase was 22.9, they just did it again the other day so I have no idea how that one came back. My spots almost look like bad freckles!! They have only recently started to itch and tingle. At night they tingle really bad when I get in bed, like a sunburn, but I take my last antihistamine right before bed and it kicks in and I am fine then. I have to go back tot he doctor this month. I have no ideas what they are goign to do to treat me.

 
Old 09-05-2007, 07:50 AM   #7
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tammi8226 HB User
Re: Help! Are these symptoms of Mastocytosis???

Quote:
Originally Posted by chriscann View Post
Tammy,

Wow someone else in Florida with this.. How does the weather effect you? I am so white, I just avoid the sun! My spots are on my legs, feet, thighs,the back half of my arms, on my back and my chest and neck, I even have some on my face. None on my tummy though. My tryptase was 22.9, they just did it again the other day so I have no idea how that one came back. My spots almost look like bad freckles!! They have only recently started to itch and tingle. At night they tingle really bad when I get in bed, like a sunburn, but I take my last antihistamine right before bed and it kicks in and I am fine then. I have to go back tot he doctor this month. I have no ideas what they are goign to do to treat me.

 
Old 09-05-2007, 08:02 AM   #8
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tammi8226 HB User
Re: Help! Are these symptoms of Mastocytosis???

Quote:
Originally Posted by chriscann View Post
Tammy,

Wow someone else in Florida with this.. How does the weather effect you? I am so white, I just avoid the sun! My spots are on my legs, feet, thighs,the back half of my arms, on my back and my chest and neck, I even have some on my face. None on my tummy though. My tryptase was 22.9, they just did it again the other day so I have no idea how that one came back. My spots almost look like bad freckles!! They have only recently started to itch and tingle. At night they tingle really bad when I get in bed, like a sunburn, but I take my last antihistamine right before bed and it kicks in and I am fine then. I have to go back tot he doctor this month. I have no ideas what they are goign to do to treat me.
CHRIS, yup, I'm a fellow Floridian. I'm 38 years old. My husband was just in Tampa last month to catch the Red Sox/Devil Rays series. As far as the weather, the heat makes me light headed, but I have a 7 year old and a 5 year old and am outdoors more than I probably should be. We spend a lot of time swimming, so at least I'm not getting overheated, although still in the sun. I'm pretty tan, so the spots mostly look like sunspots, or freckles. I have them on the backs of my arms, chest, stomach, thighs, and calves. Not so attractive. Mine don't itch at all, although I get some vague itchiness here and there once in awhile. I don't take any meds for the Masto...we haven't gotten that far yet. I take other meds. I have high blood pressure and anxiety problems. I think my outbreaks of spots is related to my messed up hormones. They started when I was pregnant. I have been on birth control pills on and off for the better part of 20 years. Since I've stopped (May), these things have been growing on me like crazy! I can't take the pill anymore because of my liver. This is all brand new to me. I've only seen the hematologist twice...once for a consult and blood work, and then for results. I have repeat blood work on the 19th and then a follow up on 10/3. I made an appointment with a hematologist at U. of Miami (my hepatologists are there). I figure, at a teaching hospital, usually they know more about these freak illnesses and how to treat them, rather than scratching their heads and looking at me like I'm nuts!

 
Old 09-05-2007, 12:05 PM   #9
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chriscann HB User
Re: Help! Are these symptoms of Mastocytosis???

My spots are started popping up for no reason. I jsut started to go to Moffit Cancer Center last month after my bone marrow test did show that the disease is also in my bone marrow now. It is still mild, but I have had two episodes where I have almost passed out. My stomach si starting to act up lately too when I eat certain foods. Lobster was the worst and I LOVE IT! I still can tolerate alcohol Thank GOd!! not in like I used to, but a drink or two does ntohig to me. Three or four and I will be in bed the entire next day.. I can go in teh sun too, but only if in a pool. My legs have swollen up liek crazy from teh sun and I looked liek my spots were goign to bleed. I also got really sick afterwards, but pools are ok though..

 
Old 09-05-2007, 12:14 PM   #10
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tammi8226 HB User
Re: Help! Are these symptoms of Mastocytosis???

What does the bone marrow involvement mean?

 
Old 09-06-2007, 05:59 AM   #11
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chriscann HB User
Re: Help! Are these symptoms of Mastocytosis???

That is how they discover if it is systemic or not. Systemic means your Mast cells in your bone marrow and possibly organs are behaving badly too.

 
Old 09-06-2007, 06:04 AM   #12
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tammi8226 HB User
Re: Help! Are these symptoms of Mastocytosis???

So, if it's in the bone marrow, what happens? Will this disease kill me? I was up all night last night with the insane tingling feeling....It's hard to explain.....it's not my skin itching or anything....it feels like a tingling inside my arms. I still have it now. Between this and the liver thing, I'm afraid I'm dying. I know the tingling could be from anxiety but I don't think so. I'm terrified. I went on the Mastocytosis Society website and it said that this is a pretty benign disease with slow progression, but I'm freaking out here!!! I just dropped the kids at school and am going to go for a swim for an hour or so to try to relax.

 
Old 09-06-2007, 01:09 PM   #13
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chriscann HB User
Re: Help! Are these symptoms of Mastocytosis???

I think it is only fatal if it is malignant. There is a leukemia version and it is very rare. It effects differnt people differently. I have been having joint pain for years and then started getting this rash all over. I also have migraines too. I can understand your fear though. My first docotr told me that there was no way it was in my bone marrow. He was adamant... BUt, since my tryptase level was over 20 my new doctor said I shoudl have teh bone marrow biopsy, it came back positive, but I have only had one doctor visit since then. He is doing additional test and then they will decide what treament to use. I am not having horrible symptoms, like I have read about. I work, I am a single parent and so far I have never gone into shock, I have however almost passed out, but I could feel it coming on. I am being treated at a cancer center which of course makes everythign seem a zillion times worse, but they were the only ones around here that really knew about this disease. At least you seem like you are goign to the right doctors. I only take claritin during the day and Atarax at night, it used to knock me off my socks, but I am used to it now. They both are antihistamines. He said he wanted to give me somethign for my stomach next visit. write again.. I am not the best for knowledge but there are people on here who have been through heck and back with this disease, they can all tell you what you shoudl do next.

 
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