Progressive Polyneuropathy

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!

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.

Good morning, Gus (@gus0557)

I had to do a measure of self-dianosing before I was able to assign my PN as idiopathis large-fiber PN. I'm not blaming my neurologist for giving me more specifics; he did use the work "idiopathic," but didn't get ito the business of large-fiber vs. small-fiber. I sat in on a slew of Foundation webinars and read a sheaf of PN articles (mostly Mayo, Cleveland clinic, and NIH) until I was able to put two and two together (no pain, but awful balance). To me that sounde like large-fiber, so when I next saw my doctor I asked him: 'Is it more likely my PN is large-fiber?' He said it was, and went on tho add other qualifiers like 'polyneuropathy' and 'sensory predominant.' So, through some self-diagnosing, I was able to get a better handle on my particular PN.

My best to you!
Ray (@ray666)

Good afternoon Ray,
Thank you for your reply. And if you would like to find out the status of healthcare, you really should read the book "Compassionomics" by Drs. Stephen Trzeciak and Anthony Mazzarelli. It's a major eye opener. Unfortunately and sadly, doctors do not listen to their patients as they should and show a massive lack of compassion. Believe me I realize quite well what I am saying since I work fora family practice at Summa Health in Akron, Ohio. Practices are more concerned with quantity and not quality of care. We see an average of over 100 patients on a daily basis. Therefore, the patients are left guessing and having to search for themselves.

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)

Thank you Ray. I too have a similar diagnosis of large fiber poly neuropathy. Ive noted some disturbing balance issues lately. But I’m continuing to push forward. Now that I recognize this issue I’m more alert to my surroundings. Not going to let it interrupt my daily activities though. Good luck.

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.

I think that's the answer: Don't let PN interupt your dail activities, no more than is necessary to stay safe. Because I'm dealing with only balance issues (no pain, at least not so far), in my early post-diagnsis months I found myself passing up all sorts of activities, from the somewhat more challenging, like an evening's dinner date with friends (host's house = 'hostile' territory! :-), to the simple and routine, like going down the front walk to fetch the morning newspaper. Finally, I had to have a meeting with myself: 'Come on, Ray, these are things you can do, if you really want to. You can do them safely. Just go step by step. If it looks too dangerous … well, maybe next month.'

Cheers!
Ray (@ray666)

So pleased to see your reply. This condition has certainly thrown me for a loop. But I will make the adjustments needed. For instance Ive recently started using a walking stick to allow me to continue hiking the area trails where we live. This is big help on the very irregular terrain & surfaces.