My PN is better'n your PN! Naw, naw!

@ray666 True dat. Pain is nonnegotiable. Balance problems are fussible, cussible, and probably dealable to a certain extent. At least it has been so far. Even the exhiliration of falling down doing balance exercises by yourself is preferable.

I wouldn't even be able to rank my PN compared to others. I have a combo of some pain and very poor balance.

I do consider myself somewhat lucky though because I do not have much pain at night. I think that would be unbearable.

I have wondered if PN from diabetes would be better than my idiopathic PN? Seems like most of the research and clinical trials focus on diabetic PN. Then I tell myself that thinking like that is petty and selfish.

I will just keep plugging along, doing what I can, with what I've been dealt. I keep on moving, doing my exercises, educating myself, and trying to stay positive.

Thanks for your post. It gave me something to think about. 😀

I love the triad, @omrbl: "fussible, cussible, and … dealable"! I had an especially grueling PT session this morning, leaving me with an afternoon––and I'm sure an evening, too––of nuisance post-workout aches & pains. But I'll take post-workout aches & pains anyday because, by this time tomorrow, I'm reasonably sure they'll have faded. Now, will my balance be any stronger? Ah, that's the $64,000 (or, to be more up-to-date, the $64,000,000,000) question! 🙂 Cheers! –Ray (@ray666)

What sort of idiopathic PN do you have, @ohkay2? Mine is chronic idiopathic large-fiber axonal polyneuropathy, a real mouthful! The only time my PN gives me pain is when I fall (which, luckily, I haven't done very often). I suppose I might be persuaded to call my PN the "better" PN. I've shied away from calling it that because unsteadiness when I'm trying to go about ain't no bed o' roses, either. Poor balance can sure mess with trying to live a life full-out! It can make good times all yesteryear's good times, and that can be downright depressing. // Here's wishing you the best, @ohkay2! ––Ray (@ray666)

@ray666
Hi Ray. I don't recall the exact diagnosis name as it was several years ago. I should dig out my old paperwork from the neurologist.

I believe it was something like small nerve cell-sensory PN plus I have radiculathy from 4 bulged disks in my lumber spine.

It was just reported on the news that a large neuro-sciences lab will be coming to my area employing @ 500 people. I'll be knocking on their door to be first in line for any clinical trials. Not afraid to be their guinea pig. Lol!

Hi, there, @ohkay2! I'd also line up to be a guinea pig; if I could only feel that my PN experience might someday help another PNer, it'd be worth. it. I'll keep my fingers crossed that the lab slated to come to your town doesn't lose its funding at the last minute. Best wishes from Never-Ending Springtime Denver! –Ray (@ray666)

Hi @ray666 I’m glad you posted this.
I was diagnosed with idiopathic large fiber sensor motor Axonal Polyneuropathy. It’s progressive.

Although I don’t have the excruciating “ouch” type pain, it’s very disabling. My legs feel very heavy, weak, and numb under the skin and in the muscles . I have sensation on the skin surface but my muscles feel like they’re becoming paralyzed. When I walk my feet thump hitting the floor. - I call my legs log legs. Lol! I’ve fallen badly several times causing ER visits for head CT scans , etc. And I have very annoying vibrating sensations in my legs and sometimes my hands and chest. The vibrating is worse in the night and wakes me several times a night. Breathing techniques will settle it down so I can go back to sleep.

My peripheral nerve damage has also caused orthostatic intolerance and has damaged my ears causing tinnitus- which I’ve had non stop for 20 years.

I’ve also had ME/CFS ( Chronic Fatigue Syndrome) for 40 years and am housebound spending most of the day lying down. My neurologist wanted to order in home PT for balance training but I can’t exercise at all due to extreme fatigue, I use a motorized wheelchair when I go out.

So yeah, like you, I don’t have the excruciating pain others have, but my disability level is over the moon. Definitely is not a “better “ PN!

I might add that I’ve been on low dose Naltrexone for a decade for arthritis and muscle aches due to fibromyalgia and ME/CFS. I’ve wondered if that’s partly why my PN isn’t particularly painful.

Do you have that annoying vibration in the nerves too? Mine started with the EbV infection 40 years ago, but got worse in later years as the PN advanced.

@db72

I have read with interest the comparisons of neuropathy. My PN is due to my celiac disease and other than an EMG test, I was not biopsied or given any test to tell what kind of neuropathy I have. Last summer I was doing fine but this winter I had a shin shave biopsy to remove a lesion and that changed things. The lesion was benign but then I started suffering some unpleasant nerve issues at the site of the biopsy. Then the extreme cold winter and snow came and that added to my pain. My neurologist said the neuropathy had progressed but was still hopeful that with my gluten free diet and wearing warmer footwear, I could get better manage my neuropathy. Now waiting on spring... However, I believe that even if we have the same kind of neuropathy, one person's experience of it might differ from another's. I guess our brains and our perceptions of pain have alot to do with this. So , alongside physical therapy (which is helpful),I am trying to brainwash myself into believing that my PN is not so bad.

Good morning, Suz (@db72)

Your PN sounds a lot like mine: idiopathic large-fiber polyneuropathy. However, you're having to put up with symptoms that I'm not. That's another part of the madness of PN: Why, if two sufferers diagnoses appear to be a match, should one sufferer be plagued by vibrating sensations and tinnitus, while the other sufferer is not? Maybe it's only a matter of my not having progressed to that stage of my PN. That's possible. I am honest enough and realistic enough to say that it is possible. What you're experiencing may be what I'll be experiencing a year or two from now. You mention at one point having to manage one of your symptoms for something like for 20 years. By comparison, my PN is a mere babe in the woods. That's a word to the wise to all of us with PN––no matter what kind of PN––we'd best be prepared for "whatever."

Suz, I wish you the very best! Stay strong.

Cheers!
Ray (@ray666)

@ray666 thank you Ray for your kind wishes!

One more thought. I think one of the reasons two people with what seems to be the same diagnosis may have quite different symptoms might be due to the cause, and also to other underlying conditions. Plus we’re all different, right? After doing all the usual investigations as to the cause of mine, it was classified as idiopathic, meaning of course 🤷‍♀️.

That said, when I first became extremely ill 40 years ago with an Epstein Barr Virus infection that turned into Chronic Fatigue Syndrome, I was bedridden for the first several years and have remained disabled ever since. The virus attacked and caused damage to my nervous system from the very first day. I was healthy as a horse the day before I got sick. I’ve had vibrationing sensations in my legs (and many other symptoms) ever since then to some degree. But over the last 20 years the numbness, tinnitus, balance problems gradually set in and progressed.

My neurologist believes the initial EBV infection triggered an autoimmune response resulting in ME/CFS and later the advancement of the PN. A lot of that is speculation but it’s based on a lot of good research opinions.

All that to say, I don’t think you should worry that yours will necessarily follow the same course because mine really began 40 years ago with a virus. Plus I have 2 autoimmune conditions, and autoimmunity runs in my family.

And yet, we both seem to have the “same” diagnosis. I think there’s just so much they really just don’t know yet about PN and it’s many different causes and forms.

Wishing you all the best as well!
Suz