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Idiopathic Polyneuropathy: My endless journey to a near-diagnosis …

Posted by Ray Kemble @ray666, Mar 29, 2023

Hello!

I have been here before. Several times each time posting under what seemed to be the correct topic at the time, such has been my maze-like journey to a diagnosis. I'm not there yet (that 100% positive diagnosis), but I'm closer. Only yesterday, I met with my neurologist, and he came as close as he dared come at the moment, calling my ongoing balance problem idiopathic polyneuropathy. Since I also have some cervical stenosis and am already scheduled for an MRI in two weeks, my neurologist suggested we plan to talk next after he has had a chance to look over the results of the MRI. This journey to a diagnosis has been a long one. I'm curious to know if others have had a similar experience. And what was the outcome? I'm doing PT for balance and taking B-12 and alpha lipoic acid (the neurologist's recommendation). But are there other things I might try at this point, something I might ask my neurologist about? I believe others' experiences with this condition would be of immense help.

Ray (@ray666)

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

Ray Kemble | @ray666 | Mar 24 2:03pm
In reply to @proteusx "Hi Ray, unfortunately, "idiopathic polyneuropathy" is not a genuine diagnosis; on the contrary, it means "we..." + (show)
@proteusx

Hi Ray, unfortunately, "idiopathic polyneuropathy" is not a genuine diagnosis; on the contrary, it means "we don't know what it is." Upwards of 30 per cent of those with idiopathic (unexplained) PN are ultimately shown to have some degree of pathological glucose intolerance, according to some studies. When you have PN plus notable spinal issues the diagnosis can become even more difficult. It is possible the two are linked or that there are multiple, separate causes. If your PN has developed distally (in the extremities) and symmetrically and then spread again in a symmetrical pattern it is likely that something different from or in addition to spinal issues is at work. I am in the same situation, trying to sort this out. You might also consider adding acetyl-L-carnitine to your supplement regimen.

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Hi, proteusx. Your post was super informative! Thank you. The word "idiopathic" has always made me smile. When my neurologist first used it at the conclusion of my first EMG, although I knew what the word meant, being an inveterate dictionary dipper, as soon as I got home, I checked the word's etymology. I was tickled to find that my Webster's Collegiate defined "idiopathic" as "peculiar" + "suffering." The next morning, I wrote a piece for our local paper called "My Most Peculiar Suffering." "Idiopathic" may not be a bona fide diagnosis, but I'll have to continue to use it until a better one comes along. 🙂 Wishing you all the best! –Ray

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 24 8:05pm
In reply to @justbob "Ray, ran across this fairly incredible source (NIH) re: pre-diabetes. "It is now increasingly being appreciated..." + (show)
@justbob

Ray, ran across this fairly incredible source (NIH) re: pre-diabetes.
"It is now increasingly being appreciated that a substantial proportion of subjects with prediabetes may exhibit peripheral neuropathy and/or neuropathic pain. The reverse is also true, inasmuch as examining patients with idiopathic peripheral neuropathy will frequently reveal prediabetes. In the general population, the prevalence of neuropathy in prediabetes is intermediate between overt diabetes and subjects with normoglycemia. This prediabetic neuropathy is, generally, milder in comparison to diabetic neuropathy and mainly affects small fibers mediating sensory function."
Bob

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@justbob, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post it for you:
- Prediabetic neuropathy: does it exist? (2012) https://pubmed.ncbi.nlm.nih.gov/22562652/

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1 reply
justbob | @justbob | Mar 25 4:45am
In reply to @ray666 "Hi, Bob. Sounds almost like a conspiracy: two conditions walking hand-in-hand. It appears to make great..." + (show)
@ray666

Hi, Bob. Sounds almost like a conspiracy: two conditions walking hand-in-hand. It appears to make great sense to pay attention to both. For years, my balance "issues," out-of-range lab numbers, on & off gastrointestinal difficulties, etc., were always considered as unrelated problems. Now I wonder: Were they? ––Ray

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Hi Ray,
Yep, an old doctor adage they are fond of: "True, true and unrelated".
May I ask, did your labs reflect pre-diabetes?
Bob

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1 reply
justbob | @justbob | Mar 25 5:16am
In reply to @colleenyoung "@justbob, I noticed that you wished to post a URL to an article with your post...." + (show)
@colleenyoung

@justbob, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post it for you:
- Prediabetic neuropathy: does it exist? (2012) https://pubmed.ncbi.nlm.nih.gov/22562652/

Jump to this post

Thanks...I was unaware of the policy.
Bob

REPLY
Ray Kemble | @ray666 | Mar 25 12:02pm
In reply to @justbob "Hi Ray, Yep, an old doctor adage they are fond of: "True, true and unrelated". May..." + (show)
@justbob

Hi Ray,
Yep, an old doctor adage they are fond of: "True, true and unrelated".
May I ask, did your labs reflect pre-diabetes?
Bob

Jump to this post

Hi, Bob

Yes, as I recall, something in my labs made my PCP mention pre-diabetic, but that was many labs ago, a couple of years before I received my PN diagnosis. I've had several labs since, but none have prompted my PCP or any of my other doctors (and boy, oh boy, have I got a surplus of doctors!) to say a word about pre-diabetic. Just something else that leaves me wondering.

Ray

REPLY
1 reply
justbob | @justbob | Mar 26 9:09am
In reply to @ray666 "Hi, Bob Yes, as I recall, something in my labs made my PCP mention pre-diabetic, but..." + (show)
@ray666

Hi, Bob

Yes, as I recall, something in my labs made my PCP mention pre-diabetic, but that was many labs ago, a couple of years before I received my PN diagnosis. I've had several labs since, but none have prompted my PCP or any of my other doctors (and boy, oh boy, have I got a surplus of doctors!) to say a word about pre-diabetic. Just something else that leaves me wondering.

Ray

Jump to this post

Hi Ray,
Same here. No one said boo about slightly elevated blood glucose levels for several years until the PN appeared.
But it seems there is a growing consensus that pre-diabetes is a contributing, if not causal factor, in PN.
Bob

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