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role of ongoing medical testing for idiopathic peripheral neuropathy

Posted by badgerguy @badgerguy, Apr 14 4:54am

Hello,

I am in my early 60s and was diagnosed with idiopathic peripheral neuropathy (IPN) in 2020. I am fortunate that I have very little pain associated with it. It exhibits as mostly numbness, weakness, and muscle twitching. It has progressed slowly, but I have noticed its progression more lately.

I have often wondered what role ongoing medical testing and tracking should play with a diagnosis of IPN. I have only seen one neurologist since 2020 (~2023). I got the impression from the neurologist (not Mayo) that I was wasting his time by being there given that I had IPN. He didn't seem to take my questions very seriously.

So I am interested in others views/thoughts. Here are some questions to get the discussion going.

Is there their value in regular appointments with a neurologist if one has IPN? If yes, what purpose do they serve? What is an appropriate frequency? What types of ongoing testing is appropriate (EMGs, other)?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for mrmacabre
mrmacabre | @mrmacabre | Sep 3 1:49pm
In reply to @cynda52 "Neurologist can help, but I am trying to find someone who specializes in peripheral neuropathy. Any..." + (show)
Profile picture for cynda52 @cynda52

Neurologist can help, but I am trying to find someone who specializes in peripheral neuropathy. Any suggestions how to pursue this? My generalist neurologist did an EMG in early 2026 to provide diagnosis of sensorimotor peripheral neuropathy in both feet. I needed to advocate for myself to get test. Diagnosis addressed mystery symptoms ranging from gritty, lumpy sock feeling to lack of balance, falls, and broken toes. After test neurologist said no further tests, try Gabapentin and PT, come back in six months.

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@cynda52 You're lucky, my last neurologist would only see me once a year after all the tests had been done with no results. After a couple of years of this he finally told me there wasn't anything else he could do for me, then he promptly retired.
Once that diagnosis of "Idiopathic" gets slapped onto you you're basically on your own. Hell, my neurologist wasn't even the one who prescribed Gabapentin for me, it was my PCP.

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celia16 | @celia16 | Sep 3 4:23pm
In reply to @cynda52 "Neurologist can help, but I am trying to find someone who specializes in peripheral neuropathy. Any..." + (show)
Profile picture for cynda52 @cynda52

Neurologist can help, but I am trying to find someone who specializes in peripheral neuropathy. Any suggestions how to pursue this? My generalist neurologist did an EMG in early 2026 to provide diagnosis of sensorimotor peripheral neuropathy in both feet. I needed to advocate for myself to get test. Diagnosis addressed mystery symptoms ranging from gritty, lumpy sock feeling to lack of balance, falls, and broken toes. After test neurologist said no further tests, try Gabapentin and PT, come back in six months.

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@cynda52 , did your doctor explain the main causes of neuropathy and rule them out, such as diabetes (treat it and improve blood sugar numbers), B12 deficiency (test and treat), spine defect (get scans, surgery, pt) , long covid, etc. Sometimes, every cause is ruled out.

But, regardless of the cause, (unless you get surgery due to spine issue), they treat the symptoms with Gabapentin. At least that has been my experience. I don’t know for certain what caused mine, but I just assume it’s a combination of things and work to keep it from getting worse. I’ve never had pain really, just paraesthesia in my feet, but that’s been improving over the last couple of years. I hope you’ll get more comments that prove helpful.

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cynda52 | @cynda52 | Sep 3 9:25pm
In reply to @celia16 "@cynda52 , did your doctor explain the main causes of neuropathy and rule them out, such..." + (show)
Profile picture for celia16 @celia16

@cynda52 , did your doctor explain the main causes of neuropathy and rule them out, such as diabetes (treat it and improve blood sugar numbers), B12 deficiency (test and treat), spine defect (get scans, surgery, pt) , long covid, etc. Sometimes, every cause is ruled out.

But, regardless of the cause, (unless you get surgery due to spine issue), they treat the symptoms with Gabapentin. At least that has been my experience. I don’t know for certain what caused mine, but I just assume it’s a combination of things and work to keep it from getting worse. I’ve never had pain really, just paraesthesia in my feet, but that’s been improving over the last couple of years. I hope you’ll get more comments that prove helpful.

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@celia16 I appreciate your list of diagnostic questions. I’m coming to grips with the challenge of getting attention paid to neuropathy. What has helped you?

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celia16 | @celia16 | Sep 4 6:43am
In reply to @cynda52 "@celia16 I appreciate your list of diagnostic questions. I’m coming to grips with the challenge of..." + (show)
Profile picture for cynda52 @cynda52

@celia16 I appreciate your list of diagnostic questions. I’m coming to grips with the challenge of getting attention paid to neuropathy. What has helped you?

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@cynda52 , I don’t really have pain, just a slight numb feeling on the bottom of my feet. So I don’t take meds. It’s lessened though since it started in 2023. And, I’m not sure of the cause. The EMG test was negative . I saw GP, neurologists, endocrinologist, rheumatologist, orthopedic doctors, podiatrists, etc. None were sure. So….was diagnosed with B12 deficiency, long covid and I have long term type 1 diabetes. So far, I treated the deficiency and work at keeping diabetes managed. Also, exercise, stay active, and stretch feet daily. They don’t feel as tingly as they used to. Recently, my rheumatologist told me it was reversible. So, I’m encouraged.
The orthopedic doctors I saw didn’t think mine was spine related, though I am not certain if that.

Do you believe your symptoms are due to that?

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heisenberg34 | @heisenberg34 | Sep 4 9:33am

Has anyone with PN tried having a spinal cord stimulator to help moderate the pain and/or other symptoms?

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kathysears | @kathysears | Sep 4 3:09pm
In reply to @carolynpatten "@brennankb55 Thanks so much for letting us know about this. I just emailed my doctor to..." + (show)
Profile picture for carolynpatten @carolynpatten

@brennankb55 Thanks so much for letting us know about this. I just emailed my doctor to request a discussion and possible rx for this. On my last visit, she prescribed Lyrica, but after reviewing the side effects, I never filled that rx. It appears that those doctors versed in functional medicine are the ones most tuned in to the “solutions” that aren’t just slapping big pharma meds on symptoms. But in so many areas - mine included - there just aren’t any of those doctors, so this forum is proving to be incredibly helpful. Thank you again!

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@carolynpatten
Are you still having success with this new low dise med?

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carolynpatten | @carolynpatten | Sep 4 6:24pm
In reply to @kathysears "@carolynpatten Are you still having success with this new low dise med?" + (show)
Profile picture for kathysears @kathysears

@carolynpatten
Are you still having success with this new low dise med?

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@kathysears Did mean low dose Naltrexone? Yes, my doctor listened to me and set me up with a consult with the pharmacist she recommends. We discussed my symptoms and he said it was appropriate, so wrote a Rx for this. It’s only available through compound pharmacies, because this low dose is considered “off label.” I started with 1 mg per night for a week, then 2 mgs for another week and this week I am on 4 mg. The standard dose for chronic pain is 4-4.5 mg per night. I have a followup appointment with the pharmacist next week. So far, it’s been excellent! The painful burning in my feet has ebbed so much that I can now actually get to sleep and stay asleep without big doses of acetominophen. One thing to be aware of is this - the pharmacist warned me that using alcohol or any opiods with this can negate the effects. Be sure you do your own research and ask questions of both your doctor and the pharmacist. Good luck!

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kathysears | @kathysears | Sep 4 6:52pm
In reply to @carolynpatten "@kathysears Did mean low dose Naltrexone? Yes, my doctor listened to me and set me up..." + (show)
Profile picture for carolynpatten @carolynpatten

@kathysears Did mean low dose Naltrexone? Yes, my doctor listened to me and set me up with a consult with the pharmacist she recommends. We discussed my symptoms and he said it was appropriate, so wrote a Rx for this. It’s only available through compound pharmacies, because this low dose is considered “off label.” I started with 1 mg per night for a week, then 2 mgs for another week and this week I am on 4 mg. The standard dose for chronic pain is 4-4.5 mg per night. I have a followup appointment with the pharmacist next week. So far, it’s been excellent! The painful burning in my feet has ebbed so much that I can now actually get to sleep and stay asleep without big doses of acetominophen. One thing to be aware of is this - the pharmacist warned me that using alcohol or any opiods with this can negate the effects. Be sure you do your own research and ask questions of both your doctor and the pharmacist. Good luck!

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@carolynpatten
Are there any risks or side effects to this new drug? I might want to try it. Do you need a prescription or just go to a compound pharmacy?

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carolynpatten | @carolynpatten | Sep 4 6:56pm
In reply to @kathysears "@carolynpatten Are you still having success with this new low dise med?" + (show)
Profile picture for kathysears @kathysears

@carolynpatten
Are you still having success with this new low dise med?

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@kathysears Also - zero side effects!

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gnocchi | @gnocchi | Sep 4 8:32pm
In reply to @cynda52 "Neurologist can help, but I am trying to find someone who specializes in peripheral neuropathy. Any..." + (show)
Profile picture for cynda52 @cynda52

Neurologist can help, but I am trying to find someone who specializes in peripheral neuropathy. Any suggestions how to pursue this? My generalist neurologist did an EMG in early 2026 to provide diagnosis of sensorimotor peripheral neuropathy in both feet. I needed to advocate for myself to get test. Diagnosis addressed mystery symptoms ranging from gritty, lumpy sock feeling to lack of balance, falls, and broken toes. After test neurologist said no further tests, try Gabapentin and PT, come back in six months.

Jump to this post

@cynda52 Try alpha lipoic acid 600 mg - brand Source Naturals and a good grade B complex vitamin - you pee out what your body doesn't need.

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