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
23 Jul 2013
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.
24 Jul 2013
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.
26 Jul 2013
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
16 Nov 2013
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
27 Feb 2014
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
1 Jul 2014
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!
2 Jul 2014
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.
7 Aug 2014
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?
8 Aug 2014
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.
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