This is steadily getting worse. I called my neurologist and could not even get an appointment to discuss anything. She said there is nothing that can be done for me. I asked about special shoes or anything to help with the balance and lack of coordination. I walk like a drunk all the time and have fallen a lot. I am very discouraged as I feel like the medical world has given up on me. My pain doctor will only discuss a pain stimulator. Has anyone else gotten to this point or know of something I can try? I am desperate, I feel like there is no hope
The neuropathy in my legs is causing severe muscle weakness, loss of balance and coordination?
Question posted by smileyzz on 23 July 2013
Last updated on 13 May 2024
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25 Answers Page 2
Have you tried TWO canes? It sounds funny at first but my husband uses two for balance. They support you so one side is not getting a double workout. Helps when you feel weak, not so cumbersome as a walker, and can be used to move small items out of your way. He found canes with L shaped handles that are easier to grip than the candy cane style handles. Good luck to all of you. We can at least be grateful for all the people who are here sharing our journey and offering support and ideas to help us solve our problems. Just remember if your doctor does not seem helpful it's time to find a new doctor. There is always something new out there to explore as we see from these posts.
Hi there. I have this same problem! My balance is horrible and my gait is so bad. Ive gone to a neurologist for almost a year, and she thinks I have PD. But the burning in my legs and feet and the extreme weakness is not PD . My brain MRI and my c spine MRI was normal as well as my nerve conduction study
Im super frustrated and so tired of the constant fatigue, weakness, inability to walk very far or stand for very long before my legs give out. I really have very strong legs, but .to me they seem so weak.its been a long time' simleyzz ' but have you found anything out yet?
My kids call me Yaya, 14 mths ago I woke up w half of head looking like Elephant Man's Wife, Dr gave meds told me allergy!! Since then almost every word you wrote sounded exactly like me! Since then a dark ring has appeared on each leg like a rubber band was on them when i walk to much, indentation appear w rings, equlibrium thrown off, blurry vision, now I have been diagnosis w myositis myalga, visits w neurologist start next week w also a rheumatologist, my MRI shows shadows on nape of neck and lower lumbar! Ive lost career I love, cant walk dog, or even enjoy shower because I topple!! Would like to correspond more maybe We can talk, I have NEVER seen this nor EVER heard of such!!
My legs burn I can't even shower I feel like they how muscles feel I feel so weak and dizzy I take neuron and Cymbalta and tramadol sometimes it sometimes I get burning in my legs
Nettiepie, I have done the endless nerve conductive tests but they don’t show the small fiber nerves. There is a nerve biopsy that tests the small nerves. I’m waiting for my appointment to have this done now and hopefully get some answers. I’m in a pain clinic and 44 years old and a wheelchair is in my very near future.
My pain dr prescribed gabapentin and that helps the nerve pain other place. Finally had epidural injections and they help with my legs. I've had physical therapy sooo many times and it never helped but it could help you so I would try it. My dosage for gabapentin is 1800mg but I started out with smaller doses. I hope whaever you try works for you. Good luck.
Have you seeked out a specialist in movement disorders? Have you been checked for Parkinsons, MS, Huntingtons disease, or any of a number of other movement based diseases?
You could have "Wernicke Syndrome" or something as simple as a Vitamin B12 deficiency?
The point is DONT give up! There is a reason you feel this way and you need to get to the bottom of it! Even if it means thinking "outside the box"
PLEASE get a second, third, fourth even fifth opinion!
See a Neurologist that specializes in movement disorders!
May God bless you with health and happiness!
Oh boy I am 66 and I have this same issue has anyone an answer for this I have had so many tests and no answers. I am off balance weakness in my legs and feel I am going to fall down. I hate this feeling still working every day but struggling holding on as I walk thanks to anyone who can offer anything
This happened to me I haven't walked in 19 months. By any chance have you taken any fluoroquinilones. Like cipro or LEVAQUIN antibiotics
Boy I know u feel I am 49 I feel like 90 I hate I am in a wheelchair I got family and friends tell me to walk I do a little my muscles are weak nobody telly under stand
I have the same problem I have spinal stenosis.
I also had weakness in my arms legs etc and my doctor checked my Potassium and found it to be on the low side and he gave me potassium supplements and now i dont have the weakness in my arms but stilll some in my right leg.
Sunset7132 I have neuropathy and severe nerve damage in my feet because of taking the antibiotic Cipro. This medication has ruined my life!!! I am now disabled and my life revolves around my pain level. I am dependent upon Oxycodone for the rest of my life. I sometimes have such severe pain that I’ve asked my dr about amputation. I’ve been suicidal just wanting relief from this pain.
I just wanted to comment that , i just called the dr because i had my first fall. I get to see him in a week (oh boy) ..so what am i supposed to do without a walker? We can't even afford a used one this week.
I have the same problem. I fall down a lot, like once a week. Not only dizziness but my right leg is the worse and gives out on me. I have trouble walking cause sometimes my foot kind of flops and I have trouble picking it up.The dr says it's spinal stenosis. He told me to get a cane which I did. It keeps me from falling down as much. I had an EMG and it confirmed that there was something wrong, likely stenosis. It might be helpful to get a cane. I don't know what your situation is but you can get a cane for about $17 from this place on the internet. My neurologist said it is not parkinsons, MS, Lupus or a bunch of other diseases. He was able to validate what the other drs said. I hope you are able to find out what it is. Good luck.
I know exactly how you feel, I use a cane which helps and good leather shoes for support. Got to watch that falling you really can get injured. I also feel the greatest medical treatments in the world got to have something to help us, the better, I can hardly take it much more. Good luck to you Moira
Have you done the trial for the spinal cord stimulator? I wasn't able to have a trial - I had too much arthritis in my spine to insert the leads. I had my trial on the operating room table. I ended up getting only 30% pain relief, but in the 18 months I've had it, a lot of the weakness and gait problems have gotten better. It's been a gradual thing - I just realized a bit ago that it's been a year or more since I've fallen. It's worth a trial at least - you never know. When else can you get insurance to pay $90,000 for a surgery? - EJ23
I'm sorry but that pain stimulator is a joke I got one in 2012 for my severe neuropathy and it did not help with the pain like they said so a year later I had it removed it was a waste of taxpayers money in my opinion and it and it drove me crazy cranking it all the way up just trying to get rid of the severe pain all it does is take your mind off the pain a little while you're getting shocked don't get it you won't like it trust me
I have neuropathy (diabetic) as well, though not as bad as yours, I think.
I wear a heavy duty brace on one leg, so my other one takes lots of pressure. I wear a new balance shoe that is pretty stiff and help prevent rollover. But I also have a custom made "mini" brace with a custom orthotic insert built in. The orthotic makes a big difference in terms of foot pain and adds more stability. The brace itself has a stiff footbed that slips into the shoe and then goes up the calf about half-way. It's open from the top of the foot and the front half of my leg so it wraps around the back of my leg with a joint at the ankle.. This means it keeps my ankle steady, keeps it from turning over, makes walking easier, etc. (and you can't see it or tell it's there when I wear pants.)
Braces themselves don't fix the neuropathy or take away the pain, but by making you more stable might make life easier, so it might be worth looking into. Occupational therapy might help in terms of day to day living.
Cheers, Ade
Hi Ade,
Thanks for responding. I went to an orthopedic doctor who said there was no special shoes or anything at all that would help my balance or walking comfort. I used to wear braces on my legs when I was little that's why I don't understand why a doctor would say that. I have done all the therapy my insurance will pay for so that's why I am desperate to find anything. Anyway thanks again.
I don't know what it is with doctors either... it's as if the absolute bare minimum is acceptable. I recently had a fracture in my ankle and my g.p. didn't see fit to send the referral to my bone doc until 2 days after I saw him. I got an appointment in 30 seconds when I went through the e.r., but still...
Hi everybody just joined up I hope people can bhelp me I have neuropathy I am in a wheel chair but my husband tells me to walk. I do a little but it think my husband don't understand
Have you asked about physical therapy? You should be using a walker to help you ambulate if you are weak and unbalanced to the point of falling. Sometimes neuropathy does get to a point where nothing much can be done. Physical therapy should be able to help you strengthen to your maximum ability and a walker will help keep you balanced so that you dont fall.
I have done therapy, insurance says I have had enough and cant pay out of pocket as it is very expensive. I use a cane most days and I do have a walker I use when I have to but I have also fallen using the walker. My legs just give out and I fall. I try to do some light stretching every day I cant do anything strenuous I have back issues also. Its very frustrating. Thanks, I appreciate your feedback
Have you spoken to a podiatrist? They are "foot and ankle" specialists and may be able to fit you for orthotics. Keep hollering and complaining. A squeaky wheel gets greased! Sometimes you just have to keep after some Drs. Get second opinions and third opinions if you have to. See Drs in different groups. Dr tend to not contradict each other if they work closely together so you may need to get opinions from another Dr who doesnt work closely with your Dr. Ask around from other people about Drs. Ask them who they see and if they like them and think they are good and go from there! Another thing you might try is to call your insurance company and ask if you have a Case Manager. Some insurance companies have Case managers that are nurses and they can really help you a lot. They can call the Drs on your behalf and guide you through the medical system.
Call the members services number on your insurance card and ask them if you have a Case Manager assigned to you and if not is it possible to get one assigned. Dont give up! Keep pushing to get something done! I know it is frustrating but in this day and age you have to advocate for your self!
wow, what a great response... we always have to remember that not all doctors graduate at the top of their class. I am having some of those same symptoms. I don't know what neuropathy is, so will go look it up. anyway great advice.
Please check out Facebook page The Solutions to Peripheral Neuropathy. There's a list of supplements to take and many are getting relief less pain and walking.
Have you been on levaquin or ciprofloxacin?
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