There is so much here which sounds like me and really reinforces my belief that there has to be more to this than just idiopathic neuropathy and finding the right pain meds to live on. I am not ready to accept that. On top of the neuropathy i also have a host of autoimmune issues, all of which could be the marker for an alternate disease, but not enough blood work for confirmation. Unfortunately I have passed on many of these immune issues to my kids and pray that they do not progress to the point where i currently am.

Does anyone know of a younger celebrity or famous figure who suffers from neuropathy? (not diabetic). I would love to shout out to them and anyone else who might listen.

Columbia and Weill Cornell do not accept my insurance. Unless I pay out of pocket, which i can not afford, I can see one of these doctors only if i qualify for an ongoing clinical trial (every one right now is for diabetic neuropathy) . I check www.clinicaltrials.gov daily to see if there are any studies being done in this country related to my issues.

I just find it hard to believe that this is it..Deal with the pain and slowly deteriorate. I want to be there for my kids for many years as a functioning person.

I,like tepol am frustrated, but i will continue to search.