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Mastocytosis
mastocytosis Information
Does mastocytosis ever go away?
i have mastocytosis and i want it to go away does it go away?
Please please tell me everything you know about systemic mastocytosis.?
A friend of mine was just told she has systemic mastocytosis. What can you tell me about this disease? Do you know anyone who has it?
Has anyone heard of mastocytosis?
Can pregnancy or labor CAUSE mastocytosis?
I have mastocytosis. while i was pregnant i has PUPS and then when i had my c section the morphine seemed to make the PUPS very very itchy. When i went home, the itching just never went away. My daughter also has mastocytosis but with no symptoms other than Darier sign. So, my question is.. did pregnancy cause mastocytosis? the morphine? the pups? its strange that we both have it ... how did that happen? what is the connection? I also get trichodynia after I have my period, which is when my sypmtoms for mastocytosis are worse. Finally, I also developed asthma after my pregnancy. I am a competitive athlete and never had any asthma symptoms before. Is this all hormonal?
Need help with questions for a dermatologist familiar with mastocytosis/ uticaria pigmentosa?
So I was born with uticaria pigmentosa. My spots showed up at 6months old. I am turning 23 this year. I still have all the same spots and they do still if they are irritated from a scratch or smack. I dont have an extremely severe case, I have a total of about15 spots on my body ranging from my legs to arms and neck face and stomach. So I decided to go and see a dermatologist at john hopkins hospital to decide if I needed to be tested for systematic mastocytosis because it is persistant when the doctors told me it would go away by puberty, and also to find out what, if anything I should be tested for as my dad was recently diagnosed with CLL chronic lymphomic lukemia stage 3. I've been reading so much my entire life on the condition and I have been having symptoms of fatigue, nausea, bowl issues, and loss of appetite from time to time... especially recently in the past couple years. The johns hopkins doctor told me nothing I didn't already know, but refered me to another pediatric doctor in maryland, within driving distance to me that I should see for more info on if I should be tested for the systematic form or if my dads cancer can relate to my condition. I just need advice, or a good dermatologist recommendation, someone who is actually familiar with uticaria pigementosa and wont give me the run around. I've done so much of that when I was a kid, now that i'm becoming an adult I have serious questions about cancer and the systematic form and if I may possibly hand this down to my kids some day. Any help or doctor recommendations in maryland for doctors would be greatly appreciated maybe advice or if I should be concerned? Thank you so much and please do not respond if you do not know anything about this condition, I need serious medical opinions only.
Anyone heard of mastocytosis?
How do I find information on mastocytosis in the UK?
Anyone know if there is a website with helpful information on Mastocytosis in the UK?
Any information regarding the infantile mastocytosis?
possible please include any support group that you know
Yes are there any cures for mast cell disease ? also know as Mastocytosis,systemic mastocytosis,SMCD?
My doctor says that in five years they can remove these mast cells with lasers, has it been done ?.. I THINK IT HAS IN MICE ? It would really improve my quality of living, it also could improve my dermatograpism & or Cfids. and or fibromyalgia, I heard my disorder is so rare only 2 people in every 33,000 have it ,any feed back would be greatly appreciated and respected..thank you
How do you control Mastocytosis?
I'm 19 and I have cutaneous mastocytosis and every day I get that burning urticaria rash and I have angioedema in the face. At some point, the edema is so severe that my tongue and throat swell up to the point where I cant breathe and have to use an epipen. I am currently stuck in my house going through severe symptoms every day. I take cromolyn sodium, tagamet, doxepin, xyzal, benadryl, atarax, atavan, zyrtec, claritin. And all they do is keep me from having a 24 7 reaction. So how can i get the sudden attacks of hive lesions and swelling under control so I can get back to a normal life?
Could I have Mastocytosis or MCAS?
I have struggled with gastrointestinal problems for years diarrhea, nausea, vomiting, weight loss, painful radiating abdominal cramps. I saw a pediatric gastroenterologist when I was an adolescent I am now 22 and was checked for Crohn's disease, ulcers, bacterial infections, etc. I am hypersensitive to foods dairy, greasy or oily foods, high fat content foods and sometimes get sick after heat and high activity exposure. Usually when I eat these foods, I get stomach pain that develops into diarrhea or nausea very quickly, sometimes before I am even done with the meal. I also was diagnosed with acid reflux disease and have unexplained bone pain and dizzy spells sporadically. When I was younger I used to get LARGE, red, itchy hives across my stomach area for unexplained reasons, but have not seen any in years. I was wondering if anyone has been diagnosed with systemic mastocytosis particularly that affecting the GI and would like to know how and if I should get tested for this disease?
Severe Stomach Pain & Systemic Mastocytosis??
Hi there... I've been diagnosed with systemic mastocytosis. I've had it under control for about 3 years now, but suddenly have had a huge flare up that no one can explain. I've been sick since the first of the year with severe nausea, stomach pain and vertigo. While changing up my antihistimines has helped, I can't seem to get rid of the stomach pain, and am still experiencing some nausea I'm taking 40 mg of Pepcid daily and I'm still suffering. Seems to happen anytime I eat, so I've pretty much stopped eating I know, not good but what would YOU do if you were in agony every time you ate? .I know it's not an ulcer we've checked that. I know mastocytosis can cause stomach pains like this, but the Pepcid has always fixed it in the past.Does anyone else have mastocytosis? Any ideas for me?? I'm leaving for my honeymoon in 4 days and I REALLY don't want to be sick the whole time Thank you for your help
Anyone in Australia and have Mastocytosis?
Hello,we have just moved to Australia and looking to get in touch with anyone with mastocytosis or systemic mastocytosis.My son has systemic mastocytosis.J
Systemic Mastocytosis: Mortal or life-threatening?
Hi there. Mi doctor believe that I have Mastocytosis, and Mastocytosis in an adult like me could mean Systemic Mastocytosis. A lot of tests will have to be done to confirm the diagnosis but now I scared to dead I surfed the web and in some webs they says that Systemic Mastocytosis is a mortal illness but in some others they says that systemic Mastocytosis have no cure but is a life threatening condition. What is the true?Thank you,PWell. Doctor believes I have mastocytosis, he believes that my arms rash is mastocytosis. A skin biopsy was made and today they will give me the results. What scare me is that my hematology exams have never been normal Since I was child I have leucopeny and hight ferritine. A lot of exams have been made Through my life and nothing bad have been found even in three bone marrow biopsies . I have lived 30 years of a normal life and no serious illness although my hematology condition, but today if a doctor says me that I have mastocytosis, maybe it could mean the beginning of the end for me.
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