1. < Neuropathy

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.

jenatsky | @jenatsky | Apr 15, 2023

It seems funny that some of you are looking for the answer to your “idiopathic” illness when in fact the name means we don’t know what the cause is. As a writer noted from his doctor “you will die with this but it will, to kill you.” There are over 25 different diagnosis I found in a brief search in Tabor’s Cyclopedic Dictionary app for which medical science has been unable to identify the cause etiology. It is defined as “Pertains to an illness of uncertain or undetermined cause”

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3 replies
jb3 | @jb3 | Apr 15, 2023

When you guys talk about an MRI what is it for? Are we talking about a brain MRI back MRI? Please clarify.

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1 reply
Ray Kemble | @ray666 | Apr 15, 2023
In reply to @njed "@ray666 - Ray - your posting about the dizziness caught my attention. At times, I get..." + (show)
@njed

@ray666 - Ray - your posting about the dizziness caught my attention. At times, I get this odd sensation (extremely hard to describe) almost as a circular motion. I guess dizziness is the only word. Meds? Low blood pres? I can't tie it to anything. Another thing that I mentioned to my primary doc...."really". Also, on your idiopathic dx, I was told that in 2018 confirmed by Mayo 2020 and hasn't changed. I too thought it was a temporary label but unless something comes up as a cause, I'm afraid the idiopathic dx will remain. One of the heartwarming neurologists I saw in perhaps 2019 said to me....you will die with this but not from it. Talk about a mixed bag of news!! That doc I scratched off the list which is what made me then turn to Mayo in MN.

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Hi, Ed (@njed) I like that abbreviation, "dx." That'll save me a lot of time LOL We continue to discover curious similarities between our two PNs. You mention an "at times" circular (dizziness?) sensation. Here I go again: Me, too! I'm familiar with the wobbliness that my PN gives; it's an old –– if unwelcome –– friend. But I would never say that dizziness is a symptom of my PN. What you've reminded me today are my very, very infrequent "spells" (every 2-3 months?) to which I could be persuaded to assign the word "dizziness." Since I don't connect them to my PN, I've bothered to mention them to any of my doctors. The last time I had one of those spells was maybe three months ago. My PN wobbliness, on the other hand, is with me every day, 24/7. ––Ray (@ray666)

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1 reply
aaron_az | @aaroncush | Apr 15, 2023
In reply to @jenatsky "It seems funny that some of you are looking for the answer to your “idiopathic” illness..." + (show)
@jenatsky

It seems funny that some of you are looking for the answer to your “idiopathic” illness when in fact the name means we don’t know what the cause is. As a writer noted from his doctor “you will die with this but it will, to kill you.” There are over 25 different diagnosis I found in a brief search in Tabor’s Cyclopedic Dictionary app for which medical science has been unable to identify the cause etiology. It is defined as “Pertains to an illness of uncertain or undetermined cause”

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Yeah I just break out in fits of giggles every time the pain escalates beyond what I can easily handle. Get off your high horse and find another discussion to bring your “enlightened” knowledge. I am personally well beyond thinking I can be cured, I just want a treatment that focuses on the underlying issues instead of just attempting to mask the issue with zombie-causing antidepressants/anticonvulsants/etc.

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Ray Kemble | @ray666 | Apr 15, 2023
In reply to @jenatsky "It seems funny that some of you are looking for the answer to your “idiopathic” illness..." + (show)
@jenatsky

It seems funny that some of you are looking for the answer to your “idiopathic” illness when in fact the name means we don’t know what the cause is. As a writer noted from his doctor “you will die with this but it will, to kill you.” There are over 25 different diagnosis I found in a brief search in Tabor’s Cyclopedic Dictionary app for which medical science has been unable to identify the cause etiology. It is defined as “Pertains to an illness of uncertain or undetermined cause”

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After getting other the shock of being told I had an idiopathic neuropathy, I considered the word's origins: "idio," peculiar; "pathic," or "pathos," suffering. Mmm, I thought, I can make use of this! The next time I'm stuck in a long checkout line, I can just announce, "I'm afflicted with a peculiar suffering! You may want to let me get to the head of the line." (Only kidding!) ––Ray (@ray666)

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Ray Kemble | @ray666 | Apr 15, 2023
In reply to @jb3 "When you guys talk about an MRI what is it for? Are we talking about a..." + (show)
@jb3

When you guys talk about an MRI what is it for? Are we talking about a brain MRI back MRI? Please clarify.

Jump to this post

I've had three different kinds of MRIs: brain, cervical (neck), and thoracic (mid-back). ––Ray (@ray666)

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jenatsky | @jenatsky | Apr 15, 2023

The funny thing abt medicine is it doesn’t always have the answer. The positive thing for you is after all the investigation they found nothing serious. That is good. Now just treat your symptoms and forget the cause.

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jenatsky | @jenatsky | Apr 15, 2023
In reply to @jenatsky "It seems funny that some of you are looking for the answer to your “idiopathic” illness..." + (show)
@jenatsky

It seems funny that some of you are looking for the answer to your “idiopathic” illness when in fact the name means we don’t know what the cause is. As a writer noted from his doctor “you will die with this but it will, to kill you.” There are over 25 different diagnosis I found in a brief search in Tabor’s Cyclopedic Dictionary app for which medical science has been unable to identify the cause etiology. It is defined as “Pertains to an illness of uncertain or undetermined cause”

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Aaron, I’m sorry you took offense. It makes more sense to look towards treatments for symptoms first. Please checkout these items below? Are you seeing a pain specialist?
https://www.mayoclinic.org/chronic-pain-medication-decisions/art-20360371
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675640/

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NJ Ed | @njed | Apr 15, 2023

@jenatsky Hi, on your comment above from 7 hours ago, what I said on my post is what the neuro doc said to me ...you will die with this but not from it. Quite different from your post. Anyway, I do agree with the rest of your post in that most of us will never know the cause unless it is related to diabetes, or some other obvious cause proven by clinical testing. For many, that is the sad part because we all go into this figuring if we can determine the cause, we got the cure. With 100 different causes, no wonder medicine can't figure this out. I also agree with you 100% that medicine doesn't always have all the answers...never will. And, unfortunately, PN is not high on the list when it comes to priority relative to research. Be well. Ed

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NJ Ed | @njed | Apr 15, 2023
In reply to @ray666 "Hi, Ed (@njed) I like that abbreviation, "dx." That'll save me a lot of time LOL..." + (show)
@ray666

Hi, Ed (@njed) I like that abbreviation, "dx." That'll save me a lot of time LOL We continue to discover curious similarities between our two PNs. You mention an "at times" circular (dizziness?) sensation. Here I go again: Me, too! I'm familiar with the wobbliness that my PN gives; it's an old –– if unwelcome –– friend. But I would never say that dizziness is a symptom of my PN. What you've reminded me today are my very, very infrequent "spells" (every 2-3 months?) to which I could be persuaded to assign the word "dizziness." Since I don't connect them to my PN, I've bothered to mention them to any of my doctors. The last time I had one of those spells was maybe three months ago. My PN wobbliness, on the other hand, is with me every day, 24/7. ––Ray (@ray666)

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@ray666 - I too have not mentioned anything to my docs about the occasional odd dizzy feeling, it happens about every 45 - 60 days. I doubt any connection to PN as well. Besides, got enough going on just trying to keep my balance!

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