My neurologist said my EMG/NCS coupled with examination was plenty of proof of my impairment and for some time, it satiated me. Eventuallly he agreed to do a punch biopsy and it showed evidence of severe small fiber neuropathy. Having the numbers helped me, and honestly given some recent, unrelated medical testing I’m glad I have it.

I’ve had an endo/colonoscopy in the last month and both times encountered wide spread ignorance from the medical professionals involved. Endo it was the anesthesiologist, who really asked pointed questions. I actually ended up talking about the results, though as likely I was sensitive, as no meds for quite some time then.

Shout out to the two nurses who asked why I was uncomfortable looking and then seemed extra tender after.

Colonoscopy had a small reminder of how awful sfn can be in ways you don’t encounter daily. The nurse ignored my pointing to where the IV went for endo. “i’ll decide where” she states, seconds before collapsing a vein in my hand. It felt like a hot needle was in there for at least 15 minutes. Same for the spot in my other hand. She got help, who made a third spot burn. Super pro was then called in, no pain.

The first nurse kept apologizing, and I kept absolving (holey Thursday, eh?) and all went well enough after, but so many had no idea about neuropathy, at least related to a somewhat younger looking fella, who still moves around rather convincingly, unless you know him well.

Anyway, I think if it will help someone feel their way through living with this, the paper could aid you.

My best,

Jon