Do any of you have autoimmune dysautonomia? How were you diagnosed? What treatment do you recieve if you don't mind me asking? I have seen one neurologist and will be seeing another in 2 weeks. I have other autoimmune disorders and believe I may have this too. I have had a rough couple of months and was diagnosed with polyneuropathy- however things have gone down hill since then. I have digestive issues, temp. control issues, muscle aches, numbness and tingling in extremities. All of this started after the H1N1 vaccine which I guess could have prompted an autoimmune response. Shelley
They haven't fingered an official cause for my dysautonomia, though I am also diagnosed with narcolepsy with cataplexy, which some newer research is showing may be autoimmune in nature. At any rate, some of these links may help answer your questions:
Hopefully community members with autoimmune dysautonomia will chime in on this if they get a chance. Is the neurologist you're seeing at a major teaching hospital? Do you know if s/he has some expertise in autonomic neurology? You may want to ask for a list of what autonomic testing they have available at that hospital or any nearby facilities.
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