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- TMEP - Mastocytosis, MCAS and HaT Support Community - Inspire
I have TMEP first suspect in 2001 biopsy from skin without spots , Thety came later Have three children with mastocytosis in skin andt two in GI tract I also have in GI mc hyperplacia or systemic in GI my spots came 2017 18
- TMEP Mastocytosis - Rare diseases and genetic disorders - Inspire
Hi ruth, I have mastocytosis,had it for 15yr,and I still have not got treatment I need, so I know how you feel,i find its heat that effects me the most, and that many symptom, you feel like a hyprocondriact, and only someone else who has this can understand how ill you can feel, my doctors are arguing about me so I just get told different things depending which doctor im seeing, I was diagnose
- TMEP - Mastocytosis, MCAS and HaT Support Community - Inspire
Prior to my TMEP diagnosis I was diagnosed with asthma which went away in 2 weeks, IBS (had a colonoscopy), and allergies Although I had allergy testing done and I am actually only allergic to ragweed I knew I had something more serious going on when I had a csection with my second child and almost died from the anesthesia
- TMEP treatment - Rare diseases and genetic disorders - Inspire
No additional flare ups but the spots weren't fading, (original patch of spots has faded considerably) Did a second biopsy and reconfirmed TMEP No additional flare ups About a year ago I moved to the Oregon coast and went to a dermatologist in Corvallis When I told him I had TMEP he gave me the deer in the headlights look
- TMEP - Mastocytosis, MCAS and HaT Support Community - Inspire
I then had another punch biopsy on my right shoulder to check for dermatomyositis, that came back negative and showed Tmep She wanted me to start taking Zyrtec once a day but I opted for Allegra once a day, also had blood work done for tryptase which came back at 4 5
- TMEP - Rare diseases and genetic disorders - Inspire
I also have TMEP I was diagnosed in February My dermatologist finally did a punch biopsy on my spots after going back with concerns 3 times My Tryptase is slightly elevated but my scans came back ok and my bone marrow biopsy came back with only 5% mast cells so only TMEP for now
- Treatment of symptoms for TMEP? Telangiectasia Macularis . . . - Inspire
(TMS RN) @NY-TMEP, if you have systemic mastocytosis (SM), it is very treatable with trigger avoidance and medication There is very clear criteria to differentiate the indolent form from aggressive Here is a link to our website that better explains
- Mastocytosis TMEP - Rare diseases and genetic disorders - Inspire
I also have TMEP mastocytosis, but I get whole body reactions, and very quickly! My allergist explained to me that a skin reaction can cause reactions throughout the body For ex , a skin allergy test, in an allergic but non-masto person, can trigger a severe whole body reaction and very rapidly
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