Hello to all.
This forum has been quite helpful thus far. My own research and "best guess" after 12 + years of on/off symptoms and 2 ED visits ("anxiety" diagnosis once, MSG rxn. 2nd visit) and perhaps a few other that should have happened, has lead me to wonder if I don't have a MCAD.
I live in MA and only 90 min from Boston- so this should be easy right? 3 of the BEST mast cell MDs in the country right down the road? But I have to be diagnosed first to be seen. SO the recommendation is a local DO (who was a speaker at a local mastocytosis conference a few years back) and I am truly praying he will have more insight than others I've seen for the past few years. I had a doc as recent as Feb/March say IA and "easy histamine reactions, take an antihistamine" but that was as far as she got.  All food allergy testing comes back NORMAL.  Even my tryptase is normal so was my histamine level (drawn before my last "crash" in February).

Is there anything specific I ought to be asking when I go?
Is there anything specific I ought to be TELLING him when I go?
My symptoms, like many stories I've read, are varied. From a hot/fiery feeling that starts in my mouth and goes to my bum (at worst Sx in Feb) to sudden nausea, diarrhea, heart racing, cold chills and body shaking, throat pressure, chest congestion and the other day I did have some rhinorrhea.
I know vibration, heat, cold, exercise (ugh! I can't even believe I reacted to mild exercise!), foods, stress, and chemicals (esp. cleaners and perfume!) are triggers.
We thought all these symptoms were hormonal since my periods were really messed up for a bit and I was dx'd w/ PCOS and since I manifested most of these symptoms in pregnancy (like the day my BP must have dropped really low and I spent hours w/ my feet up drinking fluids- that was fun).
Because my husband didn't want to see my nearly die again (bad m/c) after "one more" baby he had a vasectomy hoping we'd not have to face these symptoms again...but they've only just been at a lull until I had a few big flare ups.

CAN hormones also be a trigger????

in the past 2 weeks I've begun taking allegra twice daily and my diarrhea has stopped!  My husband has noticed that my reactions are less common and I've been able (now that we've had some cooler weather) to get out for a few walks.

That's all I've got until I see this man on Thursday (in early on a cancelation!- was going to be an Oct. apt.).

If anyone has any thoughts, suggestions or ideas please let me know.
If anyone has any suggestions on getting into Boston without "Passing Go"   please let me know!

Kelley in MA