Hi Mat,

Thank you for your lovely letter and your concern.

So far I have not tested positive for an underlying autoimmune disorder. This is both bad and good news....for I know, as in your case, having one such disorder may reflect the possibility of another. However, an underlying autoimmune condition may be treated, and I'm in contact now with someone on this site who is beginning to respond well to infusions. As I mentioned, although it takes forever, I am still searching for a more definitive diagnosis that may lead to effective treatment.

Because i have no defined underlying disorder, I've not been offered steriods. I'm not eager for them......I'm afraid of their side effects. I'm merely on a low dose of nortripyline for pain, and propanalol for my orthostatic intolerance and POTS. Very little help....so far. You may know the feeling,....I'm not sure, of a rapid, unexpected onset of chronic illness......still navigating all of those grief stages (except denial....that didn't last long...but I sort of wish it did!)

Oh, just to clarify....I really don't know the stats on concurrent sensory and autonomic neuropathy. ..the 3 percent datum dealt only with POTS patients...who tend to be young women. I've found very little so far on coexistence.... perhaps it deserves a thread here....I'd love to see more explanations for this....both in terms of personal stories and research.

Thanks again for your post!

Sylvie