Is loss of balance your primary complaint with neuropathy?

Posted by rollo8 @rollo8, Feb 9 1:07pm

Is the loss of balance your primary complaint with PN? And, fear of falling?
I have no pain in my feet. I do have numbness of primarily my toes and forefoot, and to a lesser degree of the whole foot and ankles. My feet have weird sensations of walking on mashed potatoes and sliding sideways; when I haven’t actually moved at all. Scary. I claw at the air thinking I am falling. My toes are curled and they feel stuck together. Carpeting really adds to the sliding sensation.
I am a 73y old woman and, up until the last year, I volunteered with an animal rescue and walked on uneven cement dog runs, cleaning enclosures and feeding and walking dogs. Eight years 2-3 hours, several times a week. Retired nurse and never had a sit down job. Could walk for hours in DC, just exploring.
Now I have to hold onto something when walking or I feel like I am falling. Not going out as often. Sliding sensation is mostly at home on LVP flooring and carpeting on stairs. I wear slipper socks at home. Referred to a neurologist and saw him after a 3 month wait. He has great reviews. At first he was encouraging, sure that I had an inherited condition, which I was sure I did not. 2nd visit, after lab work, he attributed it to SFN related to metabolic syndrome. He had just attended a conference. He then added ALA to the B12 prescribed by my primary. He didn’t even know if ALA was over the counter, so he sent an Rx to my pharmacy. Said he would see me in a year. I felt dismissed. Never even looked at my feet. I did research, and now take R-ALA 300 mg twice a day and B12 2000 mcg once a day. Not sure if I have been taking the supplements long enough to notice a difference. Research led me to toe spacers, toe exercises, Hoka Clifton shoes, floor based foot massager, open toe compression foot socks, and Bengay at night; Bengay for discomfort but not pain when going to bed. Actually, I bought the Hoka shoes before the numbness started, because my balance felt off. They are the only shoe I can wear now. Starting today, I am experimenting with a Zero Sunrise shoes as opposed to slipper socks in the house, to increase feeling in my feet. I have a purchased a Bob and Brad massage gun, but have not opened the box yet.
I am thinking of asking for a referral to a podiatrist to actually have my feet seen and suggestions for improving balance.
I welcome your experience and suggestions for what has worked for you.

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Upcoming Foundation for Peripheral Neuropathy Webinar...

Regain your balance: Therapy and exercise for neuropathy patients
Oct 22, 2025, 1:00pm - 2:00pm CST

Join the Foundation for Peripheral Neuropathy for a webinar with guest speakers Mark Fasick and Dr. LeeAnn Manoni from the NeuroBalance Center. In this program, you will learn how the body’s balance system works and why it is important, along with simple exercises that can help improve balance. Our speakers will explain how doctors check for fall risk and share treatment options for balance problems, with a focus on patients living with peripheral neuropathy. Both traditional methods and new, innovative approaches will be discussed, including modern technology and an overview of leg brace options when extra support is needed. This program will end with a live Q&A with the speakers.

Can’t attend live? Register to get the recording link sent to you via email after the program, or watch for it on our website.
Register: https://register.gotowebinar.com/register/4430934453460957279

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@johnbishop I'm very interested in this webinar, as my balance is a main concern for me. The exercises will be so beneficial!

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I had a neurologist that googled each symptom I told him about. This was my first visit when I was just realizing symptoms and I suspected it was neuropthy. I told him I already googled my symptoms and was hoping for testing and a professional diagnosis. 🙄🫩😄

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Profile picture for gen55 @gen55

@johnbishop I'm very interested in this webinar, as my balance is a main concern for me. The exercises will be so beneficial!

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@gen55 Hi John, thank you so much for this info on webinar for balance. I have idiopatic large fiber polyneuropathy, going on 10 yrs now. My BIGGEST complaint is BALANCE or lack of. I thank God, no pain.. Tingling, burning and numbness in feet I can deal with. Can you tell me where this is being conducted? I do plan on tuning in (if I can figure how to do this) thank you once again for this info.

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