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yikespanic

Familial Tryptasemia And Mast Cell Activation Disorders??? Questions

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Have had some troubling symptoms over the past few months. I have been awakened by a tight throat and tongue swelling on two different occasions and have had to rush to drs for treatment. Benedryl and pepsid and a weeks course of prednisone each time. iching skin that goes away and chest and neck flushing that spreads up and down. Just came home from Toledo and it was suggested I see a Mast Cell specialist. There is one in Minnasota, one in Maryland and another in Boston. I am in OH. Has anyone had to be seen for this??? My POTS has been manageable for awhile now, but just had a lot of med changes due to my BP going from low to now too high, and feeling terrible. If anyone can PM me with experiences with specialist in this area. My doctor in Toledo said their are only three that they feel comfortable with, non near me. Has anyone had to travel far, out of state and how did it go??

Thanks, Kim

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Maria C. Castells, MD Brigham and Womens Hospital http://physiciandirectory.brighamandwomens.org/Details/1728 75 Frances St., Boston, MA

Lawrence Afrin MD University of Minnesota Physicians http://www.umphysicians.org/providers/UMP_CONTENT_482758.html

Theoharis Theoharides, MD, PHD Tufts/Boston 617-636-6898

These are the three names I was given

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Yes, those are the big names in mast cell treatment.

As I mentioned, I live in MD (Baltimore), and I just had an appointment with a new immunologist, who is not an "expert", but certainly had enough knowledge that I feel comfortable with him managing my MCAS.

You might be able to find an immunologist like this in your area. I called and asked if one of the immunologists in the practice treated "mast cell patients " and the receptionist knew what I was talking about and immediately said, "Oh, you need Dr. So and So." I took that as a good sign that the receptionist had heard of it before and knew which of 7 docs to schedule me with.

Or you might try to get in with one of the experts for diagnosis and a treatment plan and then find a local immunologist who will support you.

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