Hi Deb, I’ll have some more info about the mast cell/EDS/POTS connection in Part 2 of my theory (did you read part 1, BTW?). I have not ruled out the possibility of a congenital mast cell disorder (our mast cells are not normal mast cells – they are shaped irregularly and rather than decrease in number with age, ours increase). But I think at this point we are all throwing out possibilities and mulling them over.
One important thing to note: more than half of the people with mast cell disorders respond beautifully to treatment, but the diagnostic tests are negative. It can be a booger to diagnose! Many, if not most of us with symptoms put our toes in the self-treatment mode and if we respond, then we jump into prescription medications (for example, in our family ALL of us had flaming cases of mast cell disease, but testing — except for bone marrow biopsy; haven’t done that yet — came out negative. We responded beautifully to OTC double dose Zantac/Zyrtec and now are going on prescription Gastrom. The downloadable ‘Patient Experience letter’ here is helpful: http://mastocytosis.ca
Interestingly, I got sick 8 years ago, and somehow stumbled on Zyrtec. When I was out and my insurance tried a substitute and it was not working, I remember calling the neurologist in a full-blown panic. I didn’t know why it helped, but without it I was non-functional. Unfortunately, I was not on a double dose, I had breakthrough episodes, so I thought the Zyrtec may have been a red herring and I STOPPED TAKING IT. Shoot me. We may be at the entry level of understanding this, but we are getting there!
Big hug, Diana