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POTS AND MAST CELL ACTIVATION


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My doctors at Vanderbilt told me that I also have Mast Cell Activation with my Pots among other things. Does anyone else here have that problem? I was wondering because I have had some pretty strange things going on lately. Like I was going into anaphalaxis over little things. I was having a swollen tounge and twitching all over my body, even my tounge was twitching. they say I have mast cell but I dont know why, or where it is from. Can anyone PLEASE help me with this. ANY input would be greatly appreciated.

Thanks,

Lindsay

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Sure,

First there is a link in the info section. It is majot allergic problems. I must take meds everyday for this. Since your tongue is involved I suggest getting an ANA kit so if the swelling gets out of hand you can use that. This is very serious if its effecting your respiratory system. Good luck Miriam :P

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I've never been tested for mastocytosis, but my allergist wouldn't be at all surprised if I had it. I went through a terrible period where I was developing a new allergy almost daily, inlcuding to medications.

I take benedryl every day to keep my allergic responses in check, along with several prescriptions, including singulair, advair and zyrtec every day.

You'll probably want to get yourself to a good allergist, and also take a peek at the help yourself link mentioned by Miriam--here's the direct url to the info on mast cell issues from NIH

http://www.niaid.nih.gov/factsheets/masto.htm

Hope your system calms down for you soon. Mine has been manageable with the addition of singulair and benedryl.

Nina

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When I went to the Mayo Clinic a few months ago the allergist I saw there thought I may have mastocytosis. My N-methylhistamine was high but he said that my GI biopsy was stained for masted cells and came back normal so he was not positive. He left it as a option to pursue later if I would like but said that since they had found the cause of my symptoms (POTS) that it was not necessary to pursue it right now. I think it is really interesting that others here have it.

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