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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.



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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


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


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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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