I'm glad you found it helpful. If you suspect mastocytosis, it may be worth seeing a hematologist, as I hope to soon. My WBC has also been on a downward trend for a while now, so another reason to see one for me.
And it goes without saying that I feel your frustration. The saddest part of it all is perhaps not that they are ignorant where they shouldn't be, but that they are so resistant to learning new things and opening themselves up to well-evidenced alternatives.
Good luck!
Quote:
Originally Posted by MAT52
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?
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