Idiopathic Polyneuropathy: My endless journey to a near-diagnosis …
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.
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
@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/
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
Thanks...I was unaware of the policy.
Bob
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
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