I've been living in this systemic, whole body small fiber neuropathy nightmare for about a year. My punch biopsy was on Jan 30. I shaved my legs on the same day and I haven't shaved since (I'm supposed to keep water out of those biopsy sites).

It's now more than 2 weeks later and both legs look like they are still shaven (minus a few patches of hair). I was like OMG, what is going on here!!!!?@$@%*!!!!!! So I looked at my arms, which are worse in the way of symptoms, and they too look shaven. Ugh. This disease is so awesome (insert sarcastic tone here please).

Have others had this same experience? Has SFN taken away some of your leg and arm hair?

That's not something I've experienced.

Have you called a doctor about it? Maybe it's a clue to the cause. That's what I'm always keeping an eye out for...some new symptom that might be a hint as the source of the problem.

--a significant number of people with neuropathy, particularly small-fiber syndromes, have reported this in the past on this forum and other places.

It may have more to do with ischemic insufficiency/circulation problems than with neuropathy per se (although of course, the two can be related in conditions such as diabetes or connective tissue/vascular autoimmunities). As capillaries become compromised they don't bring as much oxygen/nutrients to the skin surface and they have trouble eliminating waste products, and over time the skin can't support as many hair follicles . . .and, of course, small vessel circulatory insufficiency has been implicated in nerve damage as well.

For some people with CMT there can be dry skin and hair loss in the affected area. Damage to sensory nerve fibers (axons).

i have severe large fiber neuropathy affecting my legs and feet and have hair loss on my legs. actually it looks like i shave them. my hands and arms are also affected to a lesser degree by large neuropathy. most of the hair is gone from the backs of my hands. my forearms still have hair. i probably also have some small fiber involvement after all these years also. so in answer to your question, i dont think hair loss is unusual.

Same here, CMT with severe small and large fiber involvements, very little hair on legs, hands, and arms.

Well, I currently don't have a primary. I fired my HMO due to their ignorance. I think many on this message board can relate to that.

I am seeing a Neuro at a local teaching hospital who diagnosed me in a nanosecond thankfully....but, in general, still does not seem personally knowledgeable with acute presentations of this disease. I'll bring it up when I get my punch biopsy results, along with a list of labs that I would like her to run, if she is amenable.

Yes, damage to both small and large fiber involvements with CMT.