Sylvie,

I'm curious about your ophthalmologist saying that there is 'visible' SFN as a result of your dry eye exam. Can you provide more details about this...I'm not sure i understand. BTW, have you had a skin biopsy for SFN?
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Yes, I've had a positive biopsy (ankle and thigh)....11/15.

Apparently the ophthalmologist said he could see some nerve damage as he was looking into my eyes. I didn't question him.....is this odd or unlikely?

As for the lack of explanation for treatment. ...I don't get it either. This is why I'm trying so hard to find a more dedicated clinician.

Thanks so much for your continued concern and suggestions. ...En Bloc and Still Hoping ...it means the world to me to have such good advice from people who understand and who have far more knowledge and experience than I do. I'll follow up on your testing advice, Still Hoping, when I write to NYU tomorrow.

I also appreciate the more nuanced definitions of dysautonomia etc. It's interesting to me that some forums and sites don't use the terms "dysautonomia" and "autonomic neuropathy" interchangeably. I just wanted to put this out there so that Starburst and others may search more effectively.

Thanks so much again. From what I've read on other sites, my prolonged search for a comprehensive and effective treatment is not unusual with this odd illness, which is what I've tried to convey to Starburst. Yet, my meetings with a recognized authority are particularly frustrating....and it's difficult to be a strong advocate for myself when I feel so damn compromised....

Sylvie