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I am trying to get a proper diagnosis for the crash I've had after living just fine with POTS for 20 years. I had an allergic reaction to an antibiotic, and since then have been reacting to foods with throat/stomach irritation and flushing and much worse POTS cardiac symptoms - - not being helped yet by antihistimines (have stopped the diarrhea but not the flushing, exhaustion, POTS flare). Here's my question - - Allergist called and said I had normal tryptase levels and didn't test allergic to any of the foods I seemed to be reacting to. He said all that was abnormal was a slightly elevated total IGe. So he says not mastocytosis, but I am arguing with him that I think it's MCAD underlying my hyperadrenergic POTS, which of course he knows nothing about (gave him the Vanderbilt researcher's article). Allergist still wants to chalk this up to a major allergic reaction that will subside with time - - if only he's right. But any of you with an MCAD diagnosis also get normal serum tryptase levels? What else can I do to convince the allergist to test for MCAD (and how to do this?) short of flying to one of the experts out of state (not easy for me to do)? Anyone know of someone in Colorado I could go to who would understand POTS and MCAD? Carol
First yesterday and now again tonight I had very bad mast cell activation episodes (not sure what triggered them). Came close to using an epi-pen (which I've never done before) and going to the hospital but I took a lot of Benadryl and the worst passed. Here's the thing though - - These episodes were different from the ones I've been having for weeks now, because along with the flushing/hot skin and blood pressure fluctuations came a new and alarming symptom - - the left side of my face and throat and tongue went numb, and started to feel like they were swelling. (along with a metallic taste in my mouth) I mean really numb, as if I'd just had numbing shots at the dentist. I took Benadryl and it subsided,completely yesterday, but tonight I am still partially numb on my cheek/throat even several hours after the worst of the episode. But what concerns me even more is that this was so prominently left-sided. Has anyone else here who has a probable or confirmed MCAD diagnosis experienced a sidedness like this for numbness, or do you think I should be alarmed? I realized belatedly that I should have gone to the hospital ER tonight so that I could get the tryptase blood test and other lab work my new allergist doc wants during or immediately after an acute attack, but I didn't have anyone who could drive me until a couple hours later and I wasn't up to driving myself. Also I had taken 3 doses of Benadryl plus 1 Atarax, and I wondered if that would screw up the test results, or is it OK to be on a large dose of antihistamines when you do the acute labs? I had forgotten to ask my doctor that.. For those of you who have had acute MCAD attacks and been fortunate enough to test the tryptase to find it elevated over baseline to confirm your diagnosis - how many hours after the attack started (or stopped) was it before you did the blood draw, and had you taken high dose antihistamines? Thanks for any insights you POTS/MCAD-ers can offer.