Very interesting thread and links- thanks. My new neuro was useless and I have an appointment to see my new rheumatologist in a month's time. For myself I have been thinking about neuro Sjogren's, Ehler's Danlos Syndrome (EDS) and Mast Cell Disorders (Mastocytosis) and also wondering about possibly having Amalgam allergy that is causing burning mouth syndrome. I don't think Mast Cell Disorders or PoTS are commonly tested for in Scotland where I live. But I am hoping I'm wrong!

I was getting some relief from Piriton (not sure of possible alternative brand names in US?) but increasingly the relief is wearing off. I'm hesitant about researching PoTS too much until I know whether it is properly tested for or understood by the NHS in Scotland. I just feel I may end up getting more frustrated by doctors not knowing about stuff I've researched than if I let them do the detective work and tell me - if this makes sense?