My neuropathy started in November last year and continues to get worse. I had my first visit with a neurologist in March. Because I have two autoimmune diseases (and a liver transplant last August), he suggested I might have a third autoimmune disease which is causing the neuropathy.

I tested positive for Sjogren’s Syndrome, along with a couple other, yet to be determined, things. Yesterday, I had my second visit with my neurologist, and asked more specifics about my symptoms and possible treatment. He said I have Large Fiber Neuropathy…so, like you I’m starting to research it. He is also sending me to Dartmouth to see a neuromuscular doctor. And, tomorrow I have a second visit with a rheumatologist.

Did your neurologist tell you a possible cause of your neuropathy? Order any more labs? I live in a small town, but I’m fortunate I can drive to Dartmouth in under two hours for more specialists and treatment options. If you can, I would urge you to insist on a referral, more labs, or at least better advice from your neurologist!