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What type of specialist is the best type for Peripheal Neuropathy?

Posted by pkh3381 @pkh3381, Oct 5, 2023

What type of specialist is the best type for Peripheal Neuropathy? I have seen two neurologists, been referred to a Podiatrist, and not one has offered me help, or shown any interest. I will soon be seeing an Orthopedist about another problem and will ask him about PN. My PN is getting much worse, very quickly, and I need help. I realize there is no cure, but I also know that complications with the feet can lead to amputation if it goes too far, and I am getting very concerned.

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harryl | @harryl | Oct 19, 2023

Neurologist. Mine first ordered several blood tests, EMG test and he did a physical exam and does so every 9 months. I’m on gabapentin 400mg 5x/day (started with 100mg and titrated up over the last 4 years) and amitriptyline 20mg at bedtime.

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bluesky222 | @bluesky222 | Nov 8, 2023
In reply to @heisenberg34 "My buddy had all kinds of issues that docotor after doctor had no answer for. They..." + (show)
@heisenberg34

My buddy had all kinds of issues that docotor after doctor had no answer for. They kind of just brushed him off. He finallly went to the Cleveland Clinic where was treated with respect, time,
and deep concern. The team was able to pinpoint his problem and develop a treatment plan that finally gave him the relief he had been looking for.

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Can you find out what type of neuropathy he was diagnosed with? I have idiopathic painless peripheral neuropathy and would consider going to Cleveland Clinic if they could help me. Thanks!

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2 replies
bluesky222 | @bluesky222 | Nov 8, 2023
In reply to @louise67 "I wasn't diagnosed until I saw a neurophysiologist. That's a neurologist who specializes in nerves that..." + (show)
@louise67

I wasn't diagnosed until I saw a neurophysiologist. That's a neurologist who specializes in nerves that make the body move. I had to find him on my own; I got no help from PCP , a general neurologist, and Pain Management was a joke. Mine is treating sensory, motor, and autonomic idiopathic SFN. I also see some specialists about specific things. Another SFN patient told me about a GI Dr who understands SFN. It took 2 1/2 years to find my neurophysiologist. Please don't give up! Keep looking and don't take "I don't know" or "you don't have a problem" as the answer. Hoping you find someone soon

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I'm new to this. What is "SFN?" Thanks!

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heisenberg34 | @heisenberg34 | Nov 9, 2023
In reply to @bluesky222 "Can you find out what type of neuropathy he was diagnosed with? I have idiopathic painless..." + (show)
@bluesky222

Can you find out what type of neuropathy he was diagnosed with? I have idiopathic painless peripheral neuropathy and would consider going to Cleveland Clinic if they could help me. Thanks!

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Wait a minute. You have idiopathic "painless" peripheral neuropathy? I would love to have "painless" neuropathy. What exactly do you mean by painless? How do you know you have it is it's painless?

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1 reply
bluesky222 | @bluesky222 | Nov 9, 2023

Mayo Clinic diagnosed it as "Long-standing length-dependent sensory & motor painless peripheral neuropathy." They could not determine why I have it, therefore it is idiopathic. They said they suspect it is hereditary (although I doubt that). I have progressively worsening balance, plus drop foot, although I can still feel things on my legs and feet. I wear foot-leg braces on both legs and use a cane. It is getting so bad that my physical therapist is recommending a walker. I would LOVE to know why I have this. I did drink more alcohol than is recommended for a woman, daily for about 18 years, so I wonder if it can be alcohol related. However, it came on slowly and I have no tingling or pain. I welcome hearing about anyone else's experience like mine.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 9, 2023
In reply to @bluesky222 "Mayo Clinic diagnosed it as "Long-standing length-dependent sensory & motor painless peripheral neuropathy." They could not..." + (show)
@bluesky222

Mayo Clinic diagnosed it as "Long-standing length-dependent sensory & motor painless peripheral neuropathy." They could not determine why I have it, therefore it is idiopathic. They said they suspect it is hereditary (although I doubt that). I have progressively worsening balance, plus drop foot, although I can still feel things on my legs and feet. I wear foot-leg braces on both legs and use a cane. It is getting so bad that my physical therapist is recommending a walker. I would LOVE to know why I have this. I did drink more alcohol than is recommended for a woman, daily for about 18 years, so I wonder if it can be alcohol related. However, it came on slowly and I have no tingling or pain. I welcome hearing about anyone else's experience like mine.

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@heisenberg34 and @bluesky222, There is another discussion that you might find helpful on neuropathy with no pain.

--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

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rayca | @rayca | Nov 10, 2023
In reply to @bluesky222 "Can you find out what type of neuropathy he was diagnosed with? I have idiopathic painless..." + (show)
@bluesky222

Can you find out what type of neuropathy he was diagnosed with? I have idiopathic painless peripheral neuropathy and would consider going to Cleveland Clinic if they could help me. Thanks!

Jump to this post

If it is painless, how do you know that you have it?

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julkun | @julkun | Nov 11, 2023
In reply to @heisenberg34 "Wait a minute. You have idiopathic "painless" peripheral neuropathy? I would love to have "painless" neuropathy...." + (show)
@heisenberg34

Wait a minute. You have idiopathic "painless" peripheral neuropathy? I would love to have "painless" neuropathy. What exactly do you mean by painless? How do you know you have it is it's painless?

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You are right, painless is our goal. Don't you just love people who say they get a little pins and needles sometimes or have reduced feelings sometimes when we are suffering with severe pain, burning hot, freezing cold, severe cramping, electrical shocks, muscle weakness, balance problems, sensitivity to touch, twitching, itching, and whatever pains I left out? I say if you have NO pains, then count your lucky stars.

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adejuliannie | @adejuliannie | Nov 11, 2023

3 years ago couldn't feel Feet. I went through Treatment called Sanexas which really helped but now Medicare doesn't pay for it anymore

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