Small Fiber Neurpathy
 

I have been officially diagnosed with sfn based on a punch biopsy. Dr. believes some type of autoimmune issue, yet none shows on blood work. Have suffered with extremely painful feet for over a year. First dr. diagnosed rsd and put me on prednisone. Prednisone actually worked, but after about 6 months I decided I did not want to be on this long term and went to another neurologist for opinion. He did the punch biopsy which shows significantly reduced nerves. Started me back on higher dose of prednisone and lyrica. Looking for any other suggestions. Anyone know of any specialists in this in NY? Dont think I like these drugs but need to be able to walk.

I would recommend--
 

--a visit to the Cornell Weill Center for Peripheral Neuropathy on Madison Avenue and E. 60 th Street in Manhattan (phone is 212-888-8516).

A number of us in the NYC area, including myself, have gone through here at one time or another; it is a major research facility into small-fiber neuropathy from many causes, including celiac/gluten sensitivity, diabetes/impaired glucose tolerance, and autoimmunity, as well as a clinical practice.

Major problem may be getting a quick appointment, as they are very booked. But they give a very thorough initial evaluation (mine was on the order of two hours), they can do skin biopsy and nerve conduction studies right on site, and they will conduct exhaustive evaluations (bring all your test results to them if you can).

Be prepared, though--many small-fiber predominant syndromes remain stubbornly idiopathic; the doctors there will even tell you they often suspect autoimmune mechanisms but that the antibodies involved may be unique to that person or otherwise as yet unidentified.

I also have small fiber diagnosis from skin biopsy and still can't find out much else. However my PN neurologist said do not take predisonse till we know what is going on because it will be contraindicated for many disease that may be causes the neuropathy. I know nothing about medicine but just wanted to tell you what I was told. And have they warned you of the terrible effects of using predisone? As I already have bone death you should carefully way the risks and advantages of predisone. Long term use will result in severe bone loss.

Thanks
 

Thanks. Cornell not too far.. my biopsy was done in westchester but evaluated by Columbia. I will definately call. I can wait for an appt as there is not much else I can do at this point.