Idiopathic Progressive Polyneuropathy: How to find a specialist?

I've been diagnosed with polyneuropathy for about 18 months. Shown symptoms for a year or so before that. A neurologist at a local hospital follows it. It's fair to say she is good doctor but a generalist, treating whatever comes through the door. In the past year, my problem has progressed from my toes of both feet to my heels to just above my knees. A numbness/tightness has appeared in my right wrist. Dr. Google suggests it might be a form of the disease that is treatable (for other than burning and pain). Travel these days is difficult. Is it worth the effort to find a neurologist who specializes in polyneuropathy? If it is, how?

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

Hank - It's a pleasure to see your face now! 😊 You look as friendly and caring as you sound.

Good afternoon @robtlhughes and @colleenyoung Welcome to the neuropathy group and all of its many neuropathy versions, sensitivities, and treatment efforts. I hope we don't leave you in the dust......come on and join us. The main question seems to be: "what good is a neurologist when you are fighting a condition that has no known cure”?What's the difference?

My first visit was to a trusted orthopedic surgeon who had helped me with a total knee replacement, my thumb mess, and four shoulder surgeries including a reverse shoulder replacement. He also removed a small bone spur on my hip as it became more and more worrisome and took me to another orthopedic surgeon who ended up doing the thoracic and cerebral surgeries. He is the one who first told me "it's the fascia, Chris". He also referred me to a rheumatologist to rule out autoimmune issues.

When I decided I had gone through enough surgeries and fusions, I opened sourcebooks and found my neurologist. He was head of that division at Eisenhower in Palm Springs.

He was attentive and got to the tests on day 1. He was the first one to understand my day and offered known medications. First, gabapentin at night only. It worked for sleeping. Then he made up the compound ingredients for the lidocaine based topical. He ordered lots of tests and X-rays including MRIs. After all of those procedures, he did the punch biopsy and had it analyzed. The conclusion was Small Fiber Poly Neuropathy. SFN. He prescribed Nortriptyline as an antidepressant which did help. I have since replaced it with duloxetine because I needed more help with anxiety.

So......in my mind, this neurologist did the diagnosis and moved my journey along with stage-appropriate medications and treatments. About that time, my massage therapist was practicing Myofascial Pain Release, MFR, and I began to see her every week. And I found a coach for my medical cannabis which soon became my best and most trusted pain relief source.

I have an active and participating PCP. We absolutely share decision making and select medications very carefully. I have a dermatologist for neuropathic itch and a new hitch in the get-along........squamous cell cancer. And I have an endocrinologist for osteoporosis.

That's enough right now.......the neurologist did just what he is supposed to do. The other clinicians have stepped in and stepped it up. My PCP and I recently talked about the possibility of including a neurologist at this stage and we both agreed that everything that can be done is being done.

May you soon be free of suffering and the causes of suffering.
Chris

And as a PS, it might be helpful to read the neuropathy stories already in one block.
Member Neuropathy Journey Stories: What's Yours?:
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Do you fit in there anywhere......are your symptoms progressing in intensity? What are you using now for pain relief?

What are you most worried about.......missing a test, being excluded from a new treatment?

@artscaping Chris, very sorry to hear about the latest, squamous cell cancer. Not familiar with it but knowing its cancer, enough said. It seems when it rain it pours. My wife has so many issues its getting ridiculous at this point. My heart goes out to you dear lady. Best, Hank

Thanks Rachel. But actually the guy you see is a young vibrant 60 year old. I don't have that many shots of myself as the older more broken 68 year old I seem to have become. But thanks just the same, I'll take a compliment when I can get one.

@jesfactsmon, thank you for caring. This is all new to me. I know nothing about cancer. I have had a biopsy and immediate surgery. So..I have about 3 more weeks to wait before they do anything else. I think, HankB, it is the waiting that drives me crazy. I want to know now.
My best........Chris

More refined, that's all.