Idiopathic Progressive Polyneuropathy: How to find a specialist?

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?

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?

TO ALL WHO RESPONDED TO "IDIOPATHIC PROGRESSIVE NEUROPATHY
Thank for the inputs and helpful hints.
Many of you have classic pain and numbness with your problem. ME, I have very very little pain BUT my problem is weakness esp. in legs. I do have some foot numbness but so far, i can deal with that. IF i walk up 20 steps, I am so tired at the top, I have to rest and I workout 5 to 6 days a week. It is progressing for sure but I try exercises to help

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

I am 75 and have similar situation as you. Have had idiopathic peripheral polyneuropathy of feet and legs for 8-10 years. Fortunately, no pain. At first didn't affect my daily jogging, (45+ min) or swimming, energy or balance. . But gradually over years have had increasing problems and had to gradually decrease jogging to walking and then to walking less minutes/less often. Now down to 15 minutes usually and real problem going up or down hills. Seem to now have significant loss of muscle mass, energy, balance/coordination, feeling. At point now where even minimal physical activity brings temporary fatigue with shortness of breath. Balance, outside hot/cold temps, fatigue are now gradually decreasing some physical activities and enjoyment used to have.. Neurologist has done many tests initially to conclude is idiopathic and thus no treatment options. Blood tests and B12 tests are within acceptable ranges. So, guess increasing problems of late are just result of age----which is what many doctors often conclude with whatever maladies arise for seniors. Hope your challenges don't progress and can still be manageable.

Chris I am so sorry to hear of your latest health challenge. “Enough is enough already”I’m sure you are thinking. My thoughts and best wishes are with you, sending good vibes your way. 🤞🏻🌈💐 Helen

I am 75 and have similar situation as you. Have had idiopathic peripheral polyneuropathy of feet and legs for 8-10 years. Fortunately, no pain. At first didn't affect my daily jogging, (45+ min) or swimming, energy or balance. . But gradually over years have had increasing problems and had to gradually decrease jogging to walking and then to walking less minutes/less often. Now down to 15 minutes usually and real problem going up or down hills. Seem to now have significant loss of muscle mass, energy, balance/coordination, feeling. At point now where even minimal physical activity brings temporary fatigue with shortness of breath. Balance, outside hot/cold temps, fatigue are now gradually decreasing some physical activities and enjoyment used to have.. Neurologist has done many tests initially to conclude is idiopathic and thus no treatment options. Blood tests and B12 tests are within acceptable ranges. So, guess increasing problems of late are just result of age----which is what many doctors often conclude with whatever maladies arise for seniors. Hope your challenges don't progress and can still be manageable.

@jesfactsmon Hank, you never mentioned that you have MS!!!! I was floored when I read that you do. I am so proud of you that you did not take the MS meds, and are still doing ok. God willing, your MS will stay inactive. If you are comfortable, let me know more about your MS, and how it effects you. Thinking about you, Hank. Lori Renee

@lorirenee1 Thanks Lori, I usually forget I even have MS. It was diagnosed in 1999 when my left leg and hand suddenly became very weak. It was scary at first but 5 days after it appeared (and I could barely drive or walk) they did a steroid treatment on me in the hospital. I got back to 100% by the third day in the hospital. I have been pretty much okay since, with only 3 exacerbations since, mostly a leg become weaker for a week or so. The last was in Dec. 2012. So I always say to people, if you have to have a case of MS, you'd want the one I've got, it's the BEST. 👍 Its been pretty much a non issue since I left the hospital in July '99. So no worries! Best, Hank