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mynagirl

Pots And Mcad

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I'd never even heard of mast cell activation disorder before seeing it mentioned several times on this board, and now I'm really wondering if I shouldn't mention this to my rheumatologist (or possibly my doc at the Mayo if I am able to go back for a checkup).

For those of you that have MCAD, how did you find this out? Did you have to tell your doctor about it or had you never heard of it until the doctor mentioned it? What kind of doctor diagnosed you? How was it diagnosed? How do you manage it? Do you feel it's the cause of your autonomic problems, or simply another disease in addition to POTS.

Sorry for all the questions, just very curious to hear more about it. Thanks for any stories you can share...

Marie

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Hi....I'm currently at the Jacksonville Mayo Clinic and Dr. Pongdee seems extremely knowledgeable about mast cell diseases and other things as well that can cause similar symptoms as MCAD. He is an allergist/immunologist. Don't know which Mayo you went to? I would stick to the allergy/immunology field although I think some hematologists know about it as well. And I would also try to go back to Mayo for exploration of that if you can. Mack's Mom knows a lot about it so email her if she doesn't write a post. I don't know if I have it yet but I can tell you the histamine restricted diet has helped me more than I can write. Every time I cheat, my body punishes me. So I would highly recommend that if you have allergy problems, hives, weird symptoms that match up with MCAD on TMSforacure.org, etc. Doesn't hurt to try.

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Hi Marie-

From what I can learn so far, MCAD is still being defined by doctors and is difficult to diagnose. Some doctors seem to think it is actually indolent systemic mastocytosis that isn't being picked up because testing is inadequate at this point. Others think it is different from mastocytosis, in that it involves mast cells that degranulate too easily instead of over-proliferating.

There isn't an immunologist where I live, so my learning and diagnostic processes have been slow. I have seen a dermatologist but didn't have positive skin biopsy or tryptase. The next step would be urine methylhistamine or PGD2 testing, but these aren't available where I live. They are now looking into whether I can get approval from my health care system to see Dr. Castells in Boston.

Doctors seem to know even less about MCAD than they do about POTS. Take a look at tmsforacure.org and the Canadian Mastocytosis Society and see if you think you fit, and then start trying to find a doctor who will help you figure this out. Good luck.

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Thanks so much guys! I did find tmsforacure, and of all the crazy things they are headquartered right here in the small Texas town where I live! Small world. I may reach out to them for local doctor recommendations too.

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