Hi all,

This thread is an offshoot from one below where some posters here recently discussed how antihistamines seemed to help their PN symptoms. I also participate in a dysautonomia forum, where many members have MCAS. I never paid much attention. This is a newly-recognised disease and I had not heard of it.

Yet I thought of it in reference to a member here who wrote of his PN, hives, and GI problems....all typical if MCAS. I then did some more research (sorry I can't upload articles..I'm writing on my reader..Wikipedia is actually a good starting point). Mast cells are produced in our bone marrow and are deployed to fight infection. They can become inappropriately activated, and release histamines and other substances that can be neurotoxic.

Many people with MCAS have POTS or other cardiac dysautonomic symptoms, PN, GI problems, and allergic symptoms, including anaphylaxis. Light bulb moment: my dysautonomia and eventual PN were set off by an extreme reaction to antidepressant medication. I always assumed the meds were somehow neurotoxic (I had neurological symptoms for over a year), but no one could make sense of the fact they ultimately caused both anaphylaxis as well as a hypertensive crisis that nearly killed me. I didn't get it either....until now ...possibly.

Here it is over a year later....and I am basically bedbound with severe dysautonomia...my worst symptom is very labile blood pressure. This week I started a beta blocker (Propanalol) which really helped...but set off allergies. This is another sign of MCAS...very weird reactions to meds.

I just wish to put this out here. Testing is difficult...there are about five docs (primarily hematologists) who do this for a living in the U.S. I live in NYC...no one here! One, Anne Maitland, is no longer taking patients. I then wrote Lawrence Afrin in Minnesota and Cem Akin in Boston. Both had assistants write me back. Both have year-long waits, but each agreed to work with a physician here for testing. Nice guys. My PCP is game.

Treatment involves a variety of histamine blockers and a low-histamine diet (scary...all sorts of things verboten). But I'd do it in a heartbeat if warranted. I do want to be tested first...it's really restrictive...but easy to look up on line.

I'm wondering if anyone here has been diagnosed with MCAS.

I can tell, from the antihistamine thread, that some people here might wish to consider testing. It just would be great if I had an underlying disorder causing SFN with treatment that is not life-threatening!

Sylvie