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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@raebaby

I use many things for the numbness I have in my feet due to chemo . Lately, I find one of the under the desk elliptical Pedalers helps me with my balance and circulation. I can do it for hours. I just kind of space out while using it watching TV. I'm 83. You can find one for as little as $100 at Walmart and Amazon.

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Yes. I use it most days. I do the recumbent bike and get up to walk often. I think it keeps blood flowing. Keep moving.

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@rollo8

Yes. I am so use to multitasking. And, I like things a certain way. But, avoiding a fall is the most important.
I bought a bath bench and it is great. Have two walkers coming this Sunday. If it helps, why not?
Thank you for sharing and for suggestions. 🙏🏻❤️

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Theres no shame in the bath bench game, been using one for years and I love it. I'm pretty amazed about the PT situation. As to me most Dr.s are looking for this or that service they can sell... But sometimes Insurance will set a certain amount of it once you start. But they'll give you printouts of the excercises as you go. so when your ultimately done you'll have a full routine to address your particular needs and weaknesses... The tough part is building and sticking with your routine. Absolutely right if it helps Use it. With the walkers cane etc. you'll be moving more maintaining the muscles you have. And potentially building them and maintaining function. Verses without, not wanting to risk it, So just staying put... Here's a suggestion I posted earlier elsewhere. Who knows... but it's inexpensive and the source isn't selling anything. So in my never ending battle of Foot pressure Pain etc. I had an old container of Creatine, I had picked up along the way for some other reason. And decided to research its benefits and uses. When I came upon this, I'm just starting this now. But thought others might find it encouraging as well...
https://calgaryneuropathy.com/31-creatine-and-neuropathy/ Best wishes to All going forward

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I just finished Laser treatments for my neuropathy and no pain meds for nerve pain in over 7 weeks.

Helped me some with balance too!!
I'm working on a vibration platform with good results.

Just starting:)

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@raebaby

I've had good results with VoxxLife patches. They are expensive but they work to help with my balance. I can make one last for 48 hours. I got peripheral neuropathy from chemo. I'm 83.

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Could you tell me more about these patches?
I have significant balance issues after 25 radiation treatments on my spine.

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I buy them from the super Patch company. I don't have the package of patches in front of me as I am visiting Cancun with family. I use the Liberty Patch. They also make socks and insoles with the technology in them. It says one patch works for 24 hours, but I find I can wear it for 48 hours until it stops working. They guaranty to help you or money back within 30 days. I've been using them for around 2-3 years. I write the day I put it on it and time when applying so I know when to replace it.

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@raebaby

I buy them from the super Patch company. I don't have the package of patches in front of me as I am visiting Cancun with family. I use the Liberty Patch. They also make socks and insoles with the technology in them. It says one patch works for 24 hours, but I find I can wear it for 48 hours until it stops working. They guaranty to help you or money back within 30 days. I've been using them for around 2-3 years. I write the day I put it on it and time when applying so I know when to replace it.

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Here is the site. Because they also look for marketers, people think it is a scam, but it isn't. the Super Patch on amazon isn't the same thing.
https://www.superpatch.com/about-us

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@nrg

I just finished Laser treatments for my neuropathy and no pain meds for nerve pain in over 7 weeks.

Helped me some with balance too!!
I'm working on a vibration platform with good results.

Just starting:)

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Hello @nrg -
This is wonderful news. Laser treatments (over a period of a couple of years) resulted in gaining considerable feeling back in my feet and helped the carpel tunnel in my hands. The feeling came back very slowly - my pt (or assistant) consistently asked if the laser was too hot but of course I couldn't feel it at all. Then, one day when she asked, I told her I could feel a tickling and we were both amazed. I can feel most everything now on my hands and feet -- however, there is still pain, numbness, and tingling. My balance has not improved and I have to be careful to take my meds (Pregabalin & Tramadol) on time (every 8 hours) in order to avoid pretty awful pain. But for me, the laser therapy was a game changer!
I also was able to use the vibration plate every time I had an appointment and it, too, was invaluable for helping with stamina, muscle strength, and general well-being because it causes you to use leg muscles in ways you normally don't in everyday living with neuropathy.
Sure am glad you shared this information, as I have seen very little positive feedback regarding the laser but am so grateful that you had good results and that my therapist availed me of it, as well.
May you progress in treatment and safety!
Peace,
Barb

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@heisenberg34

Thanks for your answer. That seems like a possible answer to my voice problems. I can't seem to get the ENT people here in Delaware to look further and deeper into my problem. They sent me to a local neurologist who spent all of six minutes with me. As soon as I mentioned neuropathy, his response was, "Oh, there's no cure for that. I have to take this call". You would think that after four or five months on this junk with no real improvement, they would want to take a deeper dive. Nope. Make an appointment for next month. See ya.

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heisenberg34.... I came upon your post while researching my husband's chronic peripheral neuropathy in his feet. I just wanted to comment on your experience with the Neurologist. I almost had to laugh. As a nurse and patient, I've observed and have been in the care of a few neurologists myself and have come to the conclusion that most are very analytical in their dealings with patients. Kind of like a computer geek diving into your computer to isolate the bug causing issues. Or trying to have a jovial conversation with an unemotional, Jack Webb on the 60's-70's TV show, 'Dragnet' , "Just the facts, ma'am. Just the facts." But, Neurologists are tremendously gifted with the ability to envision the patient's complex nervous system of over 7 trillion nerves. Mind boggling! Which is why, as you eagerly describe your symptoms, the Neurologist may seem to appear detached, from the seemingly, one-sided conversation. But, as he's listening to you, he's visualizing your trillions of sparking nerve impulses, in order to isolate the area containing the nerve or nerves, that aren't sparking. I think of them as "Electrical Geeks." If Neuro says there's nothing he can do for your neuropathy, then at the very least, @gentle's suggestion of seeing a Gastroenterologist for an Endoscopy with contrast. If for no other reason than to rule out this being an upper GI issue, and also the ANA testing. You'll likely have a Team of Specialists batting for you as you continue your search for answers. I wish you well, dear one ... Mgetz

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