Anyone lost the ability to walk due to peripheral neuropathy?

Hi, @grammypj. You've asked all excellent questions. Over the years, I'veasked myself: Is this just aging, or is it PN? My neurologists (and oddly enough, I've got two) both assure me it's PN, or at least PN predominantly. I've chatted with a number of PN'ers who have large-fiber PN, like me, and who are not plagued with numbness and burning. Our odd balance seems the result of dead or dying nerves, in my case, a condition confirmed by both neurologists. They, too, tell me that the degree of sensation lost is still minimal, but not to be too discouraged if it grows progressively worse. In the meantime, I'll keep moving about – cautiously, when I must – and doing my daily PT.

I wish you a world of success in dealing with your PN!

Cheers!
Ray (@ray666)

@ray666 Now I am going to differ.. I live in a small deadend street, across the road from the entrance there is a large sporting complex. 3 Ovals a Swimming Pool and a Men's Shed + Canteen, Change Sheds etc etc. To the left of the complex, over the road is Community Hub. In late 2019 I was heading to the Hub for Tai Chi, taking a short cut across one of the ovals. Half way across my legs just froze, with awful pain, I just stood for a bit and could continue on, only problem from then on was my toes were full of glass (worse than pins & needles & not female fantasy). Ye also a lot of falls backwards mostly. Over the years I went to 6 different GPs as it came and went. In February 2024 I finally got one who listened and did some test, no result, so sent me to 2 different Neurologists and a Haemotologist. They all agreed Peripheral Neuropathy but could not find a cause. By October 2024 it started to move very fast and by October this year walking was out, I can shuffle a few yards and that is all. I do still have glass in my toes and it seems to be moving into my fingers. If I watch what I do the GP has my pain at a good level plus I've been told I have a very high pain threshhold which also helps. Like you I have a good social life and still do volunteering each week. Toodle-loo Wendy @wenner

I have read that low b 12 causes nerves thru whole body to loose their insulation. Since legs are the most active, they loose insulation(myelin) first. Without healthy nerves our muscles can't work. Best B12 is METHYL COBALAMIN, and alcohol stops absorbsion of B12 thru out small 20 ft long intestine. It closes off the pores, numbs them shut, millions of them. B12 goes straight thru and out exit. Go for it. And get walking again. James nz

Hi, Wendy (@wenner)

It sounds like you had some very specific symptoms when you first started to talk to your doctors. I didn't. I just had these non-specific balance issues––call them balance "strangenesses." Frankly, I hadn't even heard the phrase "peripheral neuropathy." I had a lot to learn! 🙂 When I first starting talking to my doctors, even the neurologists, I had to get them to understand that, while yes, I was often unsteady on my feet, and tests indicated that I had "some" sensory loss in my feet, I had no pain––no pain, no numbness (that I was aware of), no burning, no tingling. It was as though my doctors more naturally linked PN with pain, etc. It took us a little while to come to a common understanding.

Having a good day, Wendy?
Ray (@ray666)

can barely move now as the PN progresses and frantically looking for something to help at least curb the pain, even with my very high tolerance for same! Hoping to find a source for some DSO and low dose Naltrexone to try!!! I Aman 81 year old Vietnam Veteran and hope and pray they finally come up with something!!!

Marie from sunny San Diego
I am an 85 year old retired Registered Nurse. My symptoms of PN started slowly, over 25 years ago with one numb toe. I thought it was sort of cute. I didn’t know what it was. I don’t think it’s cute any more. I am now living in a. Senior residential facility because I can no longer live alone.
I fell a few times before coming here and two times since I moved here. The falls are all related to lack of balance and I now use my walker all the time as do many of the residents. I now even use it the few steps to go to the bathroom at night.
When I fell at night I needed to call for help and I sustained some large bruises and a broken rib. They asked was I. dizzy?…No.
Did I trip ??…No.
They couldn’t understand how I just fell.
I have had painless tingling and numbness for several years. Then it became painful.
I haven’t had many tests or consulted many doctors. The opinions are just that and the tests tend to be painful, expensive and tell us what we already know.
I did see two neurologists.
And I read extensively.
If this is boring , you can stop reading.
To complicate things I have had back problems for 15 years, I’ve had 3 spinal surgeries and a second spinal stimulator implanted.
I now use a narcotic patch, OTC meds for generalized pain.
The only thing that helps Neuropathy is Bel Buca narcotic patches which I tak 2x daily and CBD. I find the. CBD almost magical on its effects on the areas of my body that are hurting,back of my legs, calves and thighs ,feet only when they are hurting. Use just enough to massage it in thoroughly, it’s expensive! I tried several brands and several doses . If you don’t use enough and at the right strength it will not
work and you wil have wasted money. CBD is safe after many studies and is legal in most states.
Oh forgot to say it is a lotion that comes in a tube in different strengths. I use the strongest. 5000 mg. Yes it’s pricey…over$100 per tube. It’s worth the complete pain relief it gives me.
There is no THCmarijuana in it. It lasts a few to several hours. It takes a few doses to get.good results and to maintain therapeutic levels. It. Has no odor.
I get it online at R&R (I think) Meds.
If you do buy from them I would like to know your results .
I would like you to tell them that I referred and you will get $25 off your first order and I will also get $25.
It is not addicting
Marie Southgate

I am new here. I have neuropathy in my legs. It started about a year ago. I am 73 and in awful pain when I walk especially. My feet are totally numb, but not too painful. Mainly the pain is in both legs and I can only walk short distances without feeling extreme pain. I recently got an electric wheelchair which is great.i take gabipentin 3x a day. It helped really well when I began taking it. Now it doesn’t seem to help as much.

This group seems to be a good idea as I have no idea what I’m in for.
Sincerely,
Sfbaygirl

@sidegate83 Hi Marie, I did enjoy reading your story. I'm amazed at how different it has been for each of us. Maybe the doctors are entitled to charge so much. All 3 of us with PN and completely
different onsets and all heading in different directions. I've been told mine is oxenal (long nerves) I do notice that most who write in say small nerves. Please correct me if I'm going astray. I've also done a lot of reading on covid injections & long covid.. I'd had 5 inj & had a bad dose of long covid, thus Covid is what I am blaming for where I am now. Thankyou Mr Covid Wendy @wenner

@sfbaygirl Hi. Hang in here girl, you learn so much just reading all the stories etc. My password is "don't give up" @wenner