Hi @robtlhughes, I moved your message to this existing discussion where @oldshep asked a similar question specific for members with polyneuropathy. I did this so you could see his quest and responses from other polyneuropathy patients like @rwinney @jimhd and @artscaping. I'm hoping they will respond to your great questions "Is it worth the effort to find a neurologist who specializes in polyneuropathy? If it is, how?"

@robtlhughes Funny you bring this up. I've been wracking my brains in search of a 2nd opinion Neurologist specializing in Small Fiber Polyneuropathy. My current doc brags he is on top of his game in this area and insists there are limited answers, treatments, and the disease is still somewhat unknown by many neurologists. I believe this to be true. He's with a medical university which I think helps, however, he does not have good bedside manner and never offers me the basic info such as discussion on healthy eating, exercise, PT. I learned early we're a little bit on our own out here. SIGH! Instead he offered lidocaine infusions, which did not help, and agreed to Lyrica upon my suggestion.

As I research Neuroligists in my area, I find mainly general neurologists. I've actually been calling some and asking if these Drs are familiar with SFPN. As time goes on, my hope is that discoveries are made... non opiod pain medications are created, more research is done and cures are discovered.

Until then, here we are... sharing ideas on Connect from our own discoveries. Helping lift each other up and deal with what we've been dealt. I wish you luck in your search for someone who specializes in polyneuropathy. If you find them, let me know! 🙂

Be well,
Rachel

Hi @robtlhughes you are likely to get all sorts of answers to your question here. Some will say absolutely do try to find a good neurologist. My feeling is that a neurologist may be helpful in diagnosing that you have or do not have neuropathy (which has already been done in your case), and what type it is (e.g. small fiber, autonomic, etc.) but beyond that, from what I have read by folks here on Mayo Connect, they don't do too much for most people with PN. There are a number of drugs people take for the pain and you do need a doctor to get them but whether that doc is a neurologist or not may not matter. My wife has the PN in our family, and she has chosen not to see a neurologist. The only neurologist I personally ever went to was for MS back in 1999. After being diagnosed with it the neurologist tried to use the hard sell to push me into one of what they then referred to as the "ABC" drugs, I forget the specific names now, but there were 3 of them. I declined and have had very few issues with MS since. If I'd opted for the drugs I would have taken them once a week and had flu like symptoms for 2 days every week. Ugh! All of that said, there are a number of things people are turning to for help with their pain. Few people seem to get better from PN. I do remember that one poster here, @avmcbellar ,said she thinks she is getting better. But if you follow this forum assiduously you will hear about a lot of different strategies people are using to deal with PN. Best of luck figuring out your own dilemma, Hank