Progressive Polyneuropathy

Good morning, elained (@elained)

In the summer of 2022, I was diagnosed by EMG with idiopathic polyneuropathy. Although my doctor didn't go into it at the time, I was quick to learn that most if not all neuropathies are progressive. What would remain unknown was the speed and severity of the progression. That was up to an individual's PN. I've since refined my PN to idiopathic large-fiber (no pain, but lots of balance issues) PN. I've watched my balance carelly, alert to signs of progression. To date, I've not noticed a great deal of progresson: little to none. Last year, I had a second EMG that confirmed my layman's assessment: little to no progression. If I were to be honest, I'd say that I have experienced some progression, but it certainly hasn't been dramatic. I have to be careful around the house, doing a fair amount of wall-walking. Outdoors and in all unfamiliar environments, I tote a cane. But, after going on three years of living with PN, I'm still getting around, not the person I once was, but still in good spirits despite my PN and despite whatever progression has occurred.

I wish you well!
Ray (@ray666)

The idiopathic poly neuropathy in my feet started in my toes, and has progressed all the way back to my heels. This means that the soles of my feet are numb, tingling, and painful all the time as well, which causes balance issues now.
I don't know if it will continue up my legs into my calves, but it wouldn't surprise me if it did.

Symptoms vary so widely. I know that my idiopathic PN is affecting my feet, but I know that chiefly because my two EMG's told me so. I suspect the loss of sensation in the bottoms of my feet was so incremental, so slow in its progression that I paid it no mind. As I memtioned earlier, I got my PN diagnosis in 2022. I'd gone to see a neurologist, not because my feet were feeling "odd," but because my balance was getting wonkier and wonkier. To my mind, my feet were feeling just fine (as "just fine" as a pair of severly flat feet can ever feel 🙂 ). It took the neurologist sticking needles into the bottoms of my feet and turning to me to ask, "Do you mean to tell me, Ray, you can't feel that?" That's when I knew I'd lost sensation. Yet to this day, I still think my feet are able to "feel" things (as accurately as they once did? probably not); I have to be forever reminding myself that I no longer have the feet of a 20-year-old.

Ray (@ray666)

@elained My PN is progressive first diagnosed in 2016 but started mildly before that. I did develop drop foot in 2019 and wear AFO's since 2020. My PN seems to have slowed down and possibly stopped about 4 inches below both knees. No pain, numbness and poor balance no cause. Mayo in MN told me not much can be done but walk as much as possible as it might slow down progression. So far, looks like they might be right.

Good morning, all!

Many here know that I was laid low by a septic infection in March of 2024, 13 months ago, that on top of my pre-existing idiopathic PN. The infection had be rehabbing barefoot (actually, sock-foot) for most of those 13 months. Toward the end, not only was I contending with my PN balance issues, but going around in sock-feet day after day resulted in all of my lower body joints screamig for release. 🙂 Finally, I'm back in shoes. My balance is still wonky, but at least my joints have calmed down. Life is not perfect, but it sure is a heck of a lot better than it was a few months ago.

Here's wishing us all well!
Ray (@ray666)

hello,
I was recently diagnosed with large fiber peripheral neuropathy along with cervical and lumbar radiculopathy. My diagnosis came about a year after initial onset. I don't know if my condition can be labeled idiopathic neuropathy since the neurologist clearly told me that the large nerves in my legs are not working correctly. I can tell you that from the initial onset and up till now, my neuropathy has progressed from just some tingling on the bottom of my feet to tingling, numbeness and a lot of pain where I get to the point I can't step on the bottom of my feet. The tingling and numbness have worked themselves up my legs to the calves. I hope the pain remains only on the bottom of the feet. I see the neurologist for the second time beginning of May after having had addidtional tests both in March and in April. I have tried so many nerve and epilepsy medications prescribed by many doctors so far, but nothing has worked. My primary care physician told me to stop all medications back in January of this year and I was referred to specialists at University Hospitals in Ohio.
Neuropathy is defnitely a very chaotic and disrupting condition. I hope the neurologist will be able to start some treatment to just alleviate some of the pain and slow down the progression.

You are so marvelous. Random notes:

I used leg braces after 2016 to manage my profound PN in my legs for 2-3 years. NO ONE ever suggested them, but the minute I tried on demonstration braces I was overjoyed. the braces were a fabulous kind of AFO (ankle foot orthotics).

My profound PN was first identified in 2010. I had been tripping, unable to hike, unable to participate in exercise classes because I couldn't balance. I did not know! A neurologist that I saw for headaches did some reflex tests and had me 'walk' in the hall. I had severe foot drop, EMG showed two of three nerves in my lower legs completely unresponsive. I had many tests to find the cause....none was found.

to be continued another time.

We are helping each other, truly.

Any infection is a horror show with PN.
I'm so sorry Ray!

If the cause of damage to your nerves cannot be identified, it is called idiopathic, which means unknown pathology.

Thank you for your reply and I should hopefully know more when I see the neurologist in May.