Neuropathy Symptoms but No Pain

Hello, pah17 (@pah17)

I'm in the same boat, although I did get a positive EMG: axonal sensorimotor PN, balance and walking grief, but no pain. There doesn't seem to be much anyone can do. My neurologist has suggested I try a medicinal food called EB-N5, which I've been on now for 150 days. I can't say that my PN has improved, although I can say it hasn't gotten any worse. Other than the EB-N5, I'm diligent about maintaining and/or improving my leg strength (stationary cycling); and also, sticking to a daily balance routine.

I wish you lots of success in getting all the relief you can. This can be a frustrating business, I know.

Cheers!
Ray (@ray666)

My neuropathy began that way but now messes with my gait as it feels I am walking on marshmallows. I am having to use a walker because the feeling throws me off balance.

Walking on marshmallows is a perfect analogy! Do you always have difficulty with things approaching from either side? I do. I have to be extra vigilant when I step out in the morning to retrieve our newspaper, pausing to look slowly (!) left and right to be sure there's not a jogger or dog walker coming fast my way.

Dear Pah17,
I use the same meds. It does not help me on my pain; it helps my anti-seizure from my accident from 2012 TBI. ‘

I think that medicine was naked in the early 1990s and that was pain-help. Soon after, in the lates 1990s or early 2000, they started for being an anti-seizure; but how much? This 2012 time, I didn’t use this, but the next 2-3 years I moved to this meds. And I stated to 25% then 50% then 100% and now I’m up to 225% of that… and doesn’t work on my pain - daggoneit 👍

Sleeping on this meds for me? No - maybe yes.. diung PTs is great, but after my accident turned away from my right leg and I couldn’t swim anymore. Lifting and sorts stretching is good every 2 days.

Thx,
Greg D.

Due to drop foot, I was prescribed AFO's which not only help a tremendous amount with drop foot but as an added benefit, they provide me much improved balance. Without them on, most times, need a cane even for short distances. With them on, no cane needed. Might not be for everyone but worthwhile getting an opinion. My diagnosis is idiopathic axonal sensorimotor PN, no pain, all numbness, now 6 years and close to 7 years. My suggestion, keep moving.

I’m curious Ray - how are you when you walk in the dark - is your balance more challenging?

Hi, Debbie. Walking in the dark? Yes, indeedy! I have to be extra-extra-careful in the dark. An example? A few weeks ago, when we went from daylight-saving to regular time (or was it the other way 'round? I can never keep those straight), I opened our front door and muttered "Uh-oh … ?" The world, that only the day before had been bright (and seemingly "safe"), was suddenly DARK (and "threatening"). If I had anything to be grateful for, it was the dark that kept the neighbors from noticing me moving like a three-legged turtle down the walk to get our morning paper. That's just one example of the trouble the dark gives me. I'm much the same around the house when I snap off the lights before going upstairs. And auditoriums (movies, concerts, etc.)? I've given up on those––unless my partner is prepared to watch me crawling in the half-light on my hands and knees t o the men's room. 😀 ––Ray

Hi, Ed– I'm glad you mentioned these AFOs again. I have an appointment to see my podiatrist in two weeks (on an unrelated matter) and I'll ask him if he thinks AFOs might help with my gait. I wouldn't mind retiring my cane to stand beside the fireplace with my cross-country skis, all reminders of the way life once was. –Ray

What are AFO’s?

Hi, cjay (@cjay). I'm embarrassed! I don't know. Or I did know, but I've forgotten. Someone else will jump in here shortly and answer your question. Or I will later, once I have internet access. (At the moment, I have my browser blocker set to give me access to only a limited number of sites, like Mayo Connect.) –Ray (@ray666)