--is that people with predominanatly small fiber neuropathy, which affects the sensory nerves that subsume the sensations of pain and temperature and many autonomic functions, do not typically progress to severe motor symptoms, as I did not, though my sensory symptoms, like many with small fiber problems, were severe. Mine involved a very acute onset, though (hours!) which is not typcial; people with acute onset neuropathies tend to have more of a chanced at recovery, though said recovery is often patchy and incomplete.

In short, people with small fiber neuropathy seldom progress to major motor symptoms, though the sensory symptoms, and sometimes the autonomic symptoms, can be quite debilitating without good management. The key is to keep monitoring, get symptoms relief however one can, and not to give up on finding doctors who will work towards diagnosis of cause; while many painful small-fiber neuropathies get labelled idiopathic there are probably fewer such cases than there should be, as only specialists really familiar with neuropathy look for more obscure etiologies, ranging from novel anti-nerve autoimmunities to odd toxicities to hereditary syndromes to borderline metabolice dysregulation.

Thanks glentaj. How long did your recovery take? It's been a year for me and the pain and sensations are getting worse.
Also, did u have body wide twitching? I have such bad twitching I feel as though I must have motor nerve involvement. My legs are tightening and cramping a lot. My EMg was a while ago and I fear that since they only tested one leg from calf down that they didn't catch it ( maybe too early). Is it possible to have non stop twitching and cramping and have no motor involement?

Another thing... To have a positive biopsy u must have below 5th percentile. How is it possible to reach normal numbers ( heal) when it's that bad? How long is too long without recovery? Am I a lost cause at this point because there's no improvement ?

Sorry for your diagnosis,CG.

I am SFN only. I have a very good neuro, and I had similar fears as you did. Mine also started acutely and was full body. The course is really different for everyone. I have a lot of twitching and some cramping, but no actual large fiber or motor involvement. My neuro says twitching and cramping can be very common with SFN. The twitching and cramping fluctuates, just like all of my other SFN symptoms.

My neuro also made it clear that it is pretty uncommon for neuropathies that start off as small fiber sensory to progress to motor neuropathies...so just echoing was Glenn has said.

I was very overwhelmed and terrified when I was diagnosed. I too was hoping I was just wacky in the head, so when the doctor told me my biopsies at thi and ankle were both positive, I was very distraught. My anxiety went through the roof, and along with it so did my pain. I have come to terms with the fact that for me, stress and anxiety WILL increase my pain and symptoms, so I try to be proactive and optimistic (not always possible of course haha).