My neuropathy experience

Posted by wjm @wjm, Oct 23 6:13pm

My experience started approx. 15 years ago when I noticed that the tip of my right big toe was numb. Since that time it has affected both feet/legs. It has slowly moved and is now up to my mid-thighs. My calves too are numb. Just recently my fingertips have become numb.
Blood tests showed that I was low on B12. That has been rectified long ago with supplements. I've been to a Neurologist several times over the years. The shock tests they do verify that the neuropathy is moving up, which is of course evident to me. Alpha Lipoic Acid was recommended on my last visit, which I tried for 4 months with no results. I have symptoms that would suggest that I am diabetic, but many blood tests have proved I'm not. In the first years, when only my feet were numb, I found it too painful to walk barefoot even on grass. Now it's uncomfortable, but bearable.
I'm sure others have experienced the loss of balance when you're in darkness. Anyway I could go on and on. Anyone with similar experience found relief?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Welcome @wjm, Your neuropathy journey sounds a little like mine which I posted in another discussion here - https://connect.mayoclinic.org/comment/310341/. My symptoms have pretty much stayed with my feet and legs but not into the hands. I do have some carpal tunnel issues pain off and on in my hands but it's not associated with my neuropathy. I also have balance issues like most folks with neuropathy but try to work on a few exercises and just keep moving daily. Trekking poles are a great aid for walking when I need exercise but I hate taking them on any normal day to day errands.

There are a lot of different discussions dealing with neuropathy. You might find it helpful to click on the search at the top of any Connect page and type in a few words or phrase. Here's a search using "neuropathy numbness only" - https://connect.mayoclinic.org/search/?search=neuropathy+numbness+only

One of the better sites I've found for learning more about neuropathy is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/. Have you done any research or looked into lifestyle changes that might help?

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I was just diagnosed with neuropathy.
But my balance is so horrible 😞.
And it's not my ears.
Not my heart
Physical therapy doesn't work.
So I've started using a walking stick.
But I also have vestibular hypofunction.
Can't drive because of my unbalanced feelings 😪
Total life change.

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@wjm - At first, I thought I was reading my experience with PN, started with tingle/numbness in toes around same time frame as yours. Progressed to ankles, and then towards knees. I have a slight amount in fingertips which makes me a pill chaser. In 2019, developed drop foot. Walking in a dark room is impossible - I'd say dangerous. Every doctor I go to says...are you sure you're not a diabetic? My wife is a type one, she tests me 2 or 3 times a year plus my yearly tests show normal levels. ALA helping? Not sure but I stay on it. Like John, I have no pain. Your question, found relief? I have not found anything that helps but, I believe (without evidence) that by remaining as active as you can, like walking can slow down progression. My PN has remained below my knees for about 5 years and has not progressed in fingertips. Keep moving, stay safe, best to you.

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@njed

@wjm - At first, I thought I was reading my experience with PN, started with tingle/numbness in toes around same time frame as yours. Progressed to ankles, and then towards knees. I have a slight amount in fingertips which makes me a pill chaser. In 2019, developed drop foot. Walking in a dark room is impossible - I'd say dangerous. Every doctor I go to says...are you sure you're not a diabetic? My wife is a type one, she tests me 2 or 3 times a year plus my yearly tests show normal levels. ALA helping? Not sure but I stay on it. Like John, I have no pain. Your question, found relief? I have not found anything that helps but, I believe (without evidence) that by remaining as active as you can, like walking can slow down progression. My PN has remained below my knees for about 5 years and has not progressed in fingertips. Keep moving, stay safe, best to you.

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The neurologist hasn't prescribed anything yet just told me to use Nervine it's a cream haven't tried it yet.
But with being a pharmacy technician for 13 year's I know all the side affects caused by meds and I'm trying to just stay in much physical 🙃 I can but just standing in one spot for over 5 minutes it feels like my legs turn to concrete and number.
Best to you as well 🙏

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Not all Alpha Lipoic Acid works. In my experience I have found some brands do not work. Perhaps try another.

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@sophie46

Not all Alpha Lipoic Acid works. In my experience I have found some brands do not work. Perhaps try another.

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What brand has worked for you? I couldn’t get a recommendation from a neurologist on whether the S or R form is important.

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I think R-ALA is the one to use.

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Please go to a chiropractor also. I've had some success.

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@cecelia19

What brand has worked for you? I couldn’t get a recommendation from a neurologist on whether the S or R form is important.

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I live in Canada and use Shopper's Drug Mart.

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