Hi, weighing in to my SFN buds. I agree with everything you say. Its just awful. I feel i am constantly talking myself into just stiff upper lip, and i dont want to be a drag to people or chase people away from me. So i hear myself basically lying, trying to say im ok despite full body pain all the time

I did not get the actual report of the biopsy. they actually said 2 different things from the biopsies (at foot and upper thigh), one, that I had reduced nerve fibers in my sweat glands and two, the actual epidermal nerve fibers were still ok. They then sent me to autonomic testing which further confirmed nerve damage to my autonomic nerves (abnormal qsart and tilt table readings). Along the way, I was also diagnosed w trigeminal neuralgia by the ER but my drs are now inclined to think it was related to this SFN. As for the non length dependent piece,my neuro had that description on my last visit summary, and I do have full body, face, scalp, etc symptoms. but I never read the actual report.

I'm planning to go to johns Hopkins next but honestly not expecting any miracles, maybe a new perspective will have an idea of what caused this. I had a strange viral thing twice, 3 and 4 years ago, in 2 diff states w diff doctors, and each ended w no clear diagnosis but a suspicion of viral meningitis. I keep wondering if that was connected somehow but so long ago seems tough. I also had an extensive gum graft 4 months prior to symptoms, but again a long symptom free gap to imagine a festering issue.