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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 kathysears
kathysears | @kathysears | Sep 4 9:37pm
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 It seems we have to do all the work ourselves. Dr's don't seem to even care. I al need a neurologist who specializes in neuropathy.

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carolynpatten | @carolynpatten | Sep 4 10:21pm
In reply to @kathysears "@carolynpatten Are there any risks or side effects to this new drug? I might want to..." + (show)
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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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@kathysears As I already noted, you need a doctor’s prescription and it’s only available with a prescription at compound pharmacies. This is not a new drug. It’s been used at much higher doses to ease symptoms of opioid withdrawal. There are rare and very mild side effects. Here are some links that will give you some more information:
The links below are from Cleveland Clinic, for an overview, and from the NIH, for a nerd’s-eye view. Basically, this works by reducing inflammation and, thus, pain. It’s being used for fibromyalgia, Crohn’s, MS, cancer pain, neuropathic pain and several immune conditions. Non-addictive and minimal side effects. I haven’t had any side effects at all.

Cleveland Clinic https://www.clevelandclinicmeded.com/showcase/EKCC138/docs/1430_Hill_Dose.pdf

Nerd’s-eye
https://pmc.ncbi.nlm.nih.gov/articles/PMC3962576/

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megidigo | @megidigo | Sep 5 7:48am
In reply to @carolynpatten "@kathysears Also - zero side effects!" + (show)
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@kathysears Also - zero side effects!

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@carolynpatten @kathysears

I was going to point out the mild side effects but that was allready done. The worst for me would be insomnia and anxiety which I allready have hehehe.

Sadly low dose naltrexone wouldnt work for me as I dont have pain and there is no treatment for numbness so it would depend on what your symptoms are. Ive also read testimonials from people who take it that it can take about 3 months or so to start seeing positive effects.

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revdorth | @revdorth | Sep 5 8:46am
In reply to @pah17 "I suppose it's good to be established with a Neurologist to do the appropriate testing and..." + (show)
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I suppose it's good to be established with a Neurologist to do the appropriate testing and then see you in follow up to make sure that there is no further progression. My Neurologist doesn't even put much faith in the skin biopsy to confirm small fiber, so I've only had the EMG and conductivity study which have come back normal on two occasions. My Physician Assistant referred me just in case anything new comes down the pike by way of treatment. You never know.
I'm fortunate that I'm not in pain or disabled in any way so far. I just have the feeling that I'm wearing knee high boots that are too tight and my socks are wadded up in my shoes and/or I'm walking on pebbles or grit.

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@pah17 what a good description - that is exactly how i feel - knee high boots and wadded up socks- i see the first neurologist in my neuropathy journey in November - i am not even sure why i bother going since i am sure there is nothing at all she can do but tell me there is nothing she can do - but I want to make sure U nited health gets more money from me -I suspect this site is far more helpful than she will be - I am sure she won't ask "does it feel like you are wearing wadded socks when you walk?" but i will b e sure to tell her. dorothy Slater- -

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bealillie | @bealillie | Sep 6 10:57am
In reply to @megidigo "@carolynpatten @kathysears I was going to point out the mild side effects but that was allready..." + (show)
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@carolynpatten @kathysears

I was going to point out the mild side effects but that was allready done. The worst for me would be insomnia and anxiety which I allready have hehehe.

Sadly low dose naltrexone wouldnt work for me as I dont have pain and there is no treatment for numbness so it would depend on what your symptoms are. Ive also read testimonials from people who take it that it can take about 3 months or so to start seeing positive effects.

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@megidigo
Are you sure that LDN wouldn’t help with numbness?

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megidigo | @megidigo | Sep 6 12:33pm
In reply to @bealillie "@megidigo Are you sure that LDN wouldn’t help with numbness?" + (show)
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@megidigo
Are you sure that LDN wouldn’t help with numbness?

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@bealillie
That is what I have gathered from reading about LDN online. However this morning Ive come to realize my main issue (for now) is muscle wasting. One problem with neuropathy is I dont know if my foot feels the way it does from the atrophy or neuropathy. I suspect both. But my foot looks disgusting with veins and bones, ankles, highly visible. Like no muscle or fat at all. Feels on the verge of collapse if Im just in socks. i have to wear shoes or crocs all the time, even sleeping.
Im getting an anxiety attack right now thinking of my foot and how it looks, feels. Actually Im in a constant state of anxiety from this.

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2 replies
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bealillie | @bealillie | Sep 6 2:01pm
In reply to @megidigo "@bealillie That is what I have gathered from reading about LDN online. However this morning Ive..." + (show)
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@bealillie
That is what I have gathered from reading about LDN online. However this morning Ive come to realize my main issue (for now) is muscle wasting. One problem with neuropathy is I dont know if my foot feels the way it does from the atrophy or neuropathy. I suspect both. But my foot looks disgusting with veins and bones, ankles, highly visible. Like no muscle or fat at all. Feels on the verge of collapse if Im just in socks. i have to wear shoes or crocs all the time, even sleeping.
Im getting an anxiety attack right now thinking of my foot and how it looks, feels. Actually Im in a constant state of anxiety from this.

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@megidigo
I can imagine that caused anxiety. I have numbness, but I have the opposite. I have swollen feet so whenever I look at them, it makes me feel worse so far no one's been able to tell me why I have a DM by my ankles, except to say that my muscles are weak
I just know that looking at the things makes it even worse. If it's east for you to get the LDN I would try it. unless you're taking opioids, of course
I take it, but I'm not sure I'm at the optimal dose yet, tricky.

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celia16 | @celia16 | Sep 6 3:18pm
In reply to @megidigo "@bealillie That is what I have gathered from reading about LDN online. However this morning Ive..." + (show)
Profile picture for megidigo @megidigo

@bealillie
That is what I have gathered from reading about LDN online. However this morning Ive come to realize my main issue (for now) is muscle wasting. One problem with neuropathy is I dont know if my foot feels the way it does from the atrophy or neuropathy. I suspect both. But my foot looks disgusting with veins and bones, ankles, highly visible. Like no muscle or fat at all. Feels on the verge of collapse if Im just in socks. i have to wear shoes or crocs all the time, even sleeping.
Im getting an anxiety attack right now thinking of my foot and how it looks, feels. Actually Im in a constant state of anxiety from this.

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@megidigo , I’d like to plump up my feet. I have read about fat injections into the feet. Hope it is an option.

I wear shoes whenever walking. I wiggle my toes and stretch them when sitting without shoes and during yoga.

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1 reply
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megidigo | @megidigo | Sep 6 4:24pm
In reply to @celia16 "@megidigo , I’d like to plump up my feet. I have read about fat injections into..." + (show)
Profile picture for celia16 @celia16

@megidigo , I’d like to plump up my feet. I have read about fat injections into the feet. Hope it is an option.

I wear shoes whenever walking. I wiggle my toes and stretch them when sitting without shoes and during yoga.

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@celia16
I was reading about the fat pad injections a little while ago

Ive tried and still do wear toe spacers for the toes. I cant wiggle me toes they are effectively frozen together. Sigh

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1 reply
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celia16 | @celia16 | Sep 7 7:35am
In reply to @megidigo "@celia16 I was reading about the fat pad injections a little while ago Ive tried and..." + (show)
Profile picture for megidigo @megidigo

@celia16
I was reading about the fat pad injections a little while ago

Ive tried and still do wear toe spacers for the toes. I cant wiggle me toes they are effectively frozen together. Sigh

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@megidigo , I wonder if physical therapy would help.

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