No one can tell you what it will look like. Many people have relatively slow progress. Debi (St. George) and I have similar biopsy results and are on pain management with pretty strong drugs, I am on MS Contin, she was on BuTrans patches last I heard. We have different causes for our SFN, mine is hereditary, but our biopsies revealed no nerve fibers at lower leg, so about as bad as it can be. My biopsy at upper thigh showed the fibers breaking down, that was five years ago.

Did your doctor give you an indication of the actual results? Were the nerve fibers reduced or totally absent?

This has been a lifelong process for me, although the numbness started in my toes about 20 years ago. I have had leg pain for as long as I can remember, gradually getting worse. I have used a hiking pole to help me walk for the past 5 years, now I use a wheelchair occasionally, especially if I will have to stand for any length of time. I still go for walks, but am weakening. Steps and inclines are very difficult and I am getting AFO's, ankle foot orthotics with bracing to help with dragging my toes and ankle weakness.

It has taken me a long time to get this bad, with age (I am 53) the deterioration seems to have sped up. I was pretty strong for a long time. I would concentrate on keeping as healthy as possible, using what muscles you can, even if it requires pain medication to exercise it is worth it. Do not focus on the long term unless you absolutely have to, if moving in the future, for example, one floor might be prudent. Same with job opportunities. But don't live with "what ifs?" unnecessarily. No one can predict the progress of this disease.

Do you feel any sense of relief at having your symptoms confirmed? I know that was huge for me even though it was a severe diagnosis.