1. < Neuropathy

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.

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

rollo8 | @rollo8 | Feb 11 7:04pm
In reply to @bob1946 "Have had balance problems for as long as I have had nueropathy. For me I have..." + (show)
@bob1946

Have had balance problems for as long as I have had nueropathy. For me I have worn braces that can be bought on line, these are worn inside your shoe. I don’t go anywhere without them. I also have drop foot which results in me stubbing my toe & tripping. I have found that Cadence Shoes which have a neoprene bottom which lets your foot slide instead of your toe grabbing. Hope this helps.

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Could you suggest a brand for the braces? Thank you.

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1 reply
bob1946 | @bob1946 | Feb 12 9:09am
In reply to @rollo8 "Could you suggest a brand for the braces? Thank you." + (show)
@rollo8

Could you suggest a brand for the braces? Thank you.

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If you look on Amazon they are a neoprene leaf spring semi rigid support brace for $44.99. They are easy to get on and off. I am working on a new AFO that fits on the outside of your shoe which Medicare will pay for. Will let you know the results after I try them.

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1 reply
lvgal | @lvgal | Feb 12 10:14am
In reply to @allegheny "I have had neuropothy for about 8 yrs. Numbness in feet and calves but only to..." + (show)
@allegheny

I have had neuropothy for about 8 yrs. Numbness in feet and calves but only to a lesser degree. I have not been able to walk in barefeet for about the same amount of time, feel like I am walking on sharp stones. My balance issue started 3 yrs ago. I was at a party, had 1/2 glass of wine when I felt I needed to put my finger on counter to steady myself, no I was not dizzy. As soon as I put my fingers on counter I was fine. My balance has worsened since then, no cane yet. Well I do use a cane if going to an event with lots of people. I find exercise and shoes Hoka Bondis with Powerstep insoles have been a tremendous help for me. In my opinion,Neurologists just dont know much about neuropathy, they just wing it. Ive been through 4 with absolutely no answers. The last one just last week, prescribed Lanocaine 4% for pain that I get about once every month in my thighs. CVS called and said that the same script is available over the counter and alot cheaper. He never told me to make another appt. I think that he just could not answer my simple questions and did not want me back. Who knows. I find more info on Mayo Connect!!! Thank You All!!

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I agree with you. Neurologists I have seen- three of them are clueless. If I mentioned advanced treatment of any kind, they say there is no scientific study to support anything for relief of the numbness I have. Balance is a big issue for me. I go to a physical therapist and that help . I use an ByAcre rolling walker. I am past the use of canes unless someone is there I can grab onto. I ordered the "earth" type of shoes. Waiting for them to arrive.

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suetex | @suetex | Feb 12 10:47am
In reply to @allegheny "Yes, balance or lack of is my main issue. One dr. explained those with large fiber..." + (show)
@allegheny

Yes, balance or lack of is my main issue. One dr. explained those with large fiber idiopathic neuropathy are not grounded, feet do not get signal from brain. Makes sense I guess, all I have to do is put a finger on anything, counter tops chair, even trash cans when hauling to street, I am fine. Hoka Bondis for me are the best.Best Wishes to all Hoping to find Hokas on sale Presidents Day coming!!

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I too have this. As a result of SFN caused by Sjogren's Disease. According to my Drs. if you have SFN long enough the large fibers get effected, too. They are a part of your autonomic nervous system that tells your body where it is in space. The nerves exit the spine at the lumbar level and if there is any nerve pinching (and most of are old enough to have that) then it effects your balance. Interestingly, it causes no pain-just the balance issues. I don't know how long I've had SFN as it usally causes pain but I have none. Go figure. Took a while to figure this out. I take IvIg every 3 weeks and Retuximab twice a year and the positive results are very slow in coming. But they come and I am very determined to make it to 100.

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2 replies
raebaby | @raebaby | Feb 12 11:34am
In reply to @ps6288 "While ?I was going through chemo my oncologist kept asking me every month do you have..." + (show)
@ps6288

While ?I was going through chemo my oncologist kept asking me every month do you have neuropathy and I said no so I thought I was fortunate. But then after chemo was all over I got neuropathy so is there anybody else who got neuropathy from chemo?

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I got neuropathy from chemo I had for breast cancer. I had to quit driving also because I can't feel the pedals. I've gotten some help from Voxxlife patches and an under the desk Pedaler.

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scain | @scain | Feb 12 4:11pm
In reply to @rollo8 "I have seen a discussion of chemo related neuropathy. In that search bar, at the top..." + (show)
@rollo8

I have seen a discussion of chemo related neuropathy.
In that search bar, at the top of this support group, search chemo and neuropathy.
I have also seen a moderator ‘bump’ a conversation to another conversation that more closely answers a question.

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I have loss of balance and general difficulty walking as I have lost sensation in my soles of feet and feet in general. I have read a lot of posts here and wonder when people refer to the pain in feet and legs. I wouldn't call what I experience pain but more like restless leg syndrome. Maybe this will lead to pain later. Not sure as I have t had a formal diagnosis by a doctor. I will see a neurologist for first available appointment. I began taking my husband's ropininrole that he takes for restless legs. The only problem with it is that you have to remember to begin taking them in the morning even though the problem sensations don't start until night time if you forget the morning dose it is difficult to catch up and relieve the sensations. Also my toes feel almost webbed some days. I just ordered some diabetic socks from Amazon that are suppose to alleviate the marks left behind as if your socks are too tight. Also they said that the toes are roomy. So I will see how they work out for me. I haven't graduated to the shoes that you all write about. I am sure that will be the next step. Since I have no diagnosis yet I havent started any p.t I just want to say again how helpful u find this site and want to thank everyone for honest answers to s complex problem.

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1 reply
allegheny | @allegheny | Feb 13 7:12am
In reply to @suetex "I too have this. As a result of SFN caused by Sjogren's Disease. According to my..." + (show)
@suetex

I too have this. As a result of SFN caused by Sjogren's Disease. According to my Drs. if you have SFN long enough the large fibers get effected, too. They are a part of your autonomic nervous system that tells your body where it is in space. The nerves exit the spine at the lumbar level and if there is any nerve pinching (and most of are old enough to have that) then it effects your balance. Interestingly, it causes no pain-just the balance issues. I don't know how long I've had SFN as it usally causes pain but I have none. Go figure. Took a while to figure this out. I take IvIg every 3 weeks and Retuximab twice a year and the positive results are very slow in coming. But they come and I am very determined to make it to 100.

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Hi Suetex,thank you so much for the informative info. I have never heard of the 2 drugs that you are taken.I will check them out. Like I have said before neurologists are no help to me, however I do like my PCP. I will ck with her. Thanks again!

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2 replies
pollypolly | @pollypolly | Feb 13 7:52am
In reply to @suetex "I too have this. As a result of SFN caused by Sjogren's Disease. According to my..." + (show)
@suetex

I too have this. As a result of SFN caused by Sjogren's Disease. According to my Drs. if you have SFN long enough the large fibers get effected, too. They are a part of your autonomic nervous system that tells your body where it is in space. The nerves exit the spine at the lumbar level and if there is any nerve pinching (and most of are old enough to have that) then it effects your balance. Interestingly, it causes no pain-just the balance issues. I don't know how long I've had SFN as it usally causes pain but I have none. Go figure. Took a while to figure this out. I take IvIg every 3 weeks and Retuximab twice a year and the positive results are very slow in coming. But they come and I am very determined to make it to 100.

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Please, what is SFN? I am new to this. It would be so helpful if everybody would simply spell out their symptoms/diagnosis rather than saving the few seconds it takes to type them out. So frustrating!

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1 reply
pollypolly | @pollypolly | Feb 13 7:55am
In reply to @bob1946 "If you look on Amazon they are a neoprene leaf spring semi rigid support brace for..." + (show)
@bob1946

If you look on Amazon they are a neoprene leaf spring semi rigid support brace for $44.99. They are easy to get on and off. I am working on a new AFO that fits on the outside of your shoe which Medicare will pay for. Will let you know the results after I try them.

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What is an AFO? And can you provide links to the items you are referring to?

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1 reply
allegheny | @allegheny | Feb 13 8:04am

Is there any other tests other then EMG for type of neuropathy?I was diagnosed 8 yrs ago with large fiber idiopathic polyneuropathy. New dr. wants another emg. I just cant do it, much too painful for me. I can still remember the pain from 8 yrs ago. Dr.did not suggest any other testing and does not want to see me again, only if I have changes. I would love to have further testing with no pain. Suggestions??

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