Peripheal neuropathy

Greg, after months of searching I finally came across a web-site with other people that have non- diabetic neuropathy and for a while I thought I was the only one with neuropathy not being a diabetic. I know there are so many types of neuropathy mine is poly neuropathy in my lower exetremities ( leg's and feet) i have taken all rugs out of my house and made all bathroom's handi-cap accessible. I still have upper arm strength and use small weights and a stationary bike with an incline to work muscles and hopefully help damage nerves a bit. My Doctor told me I got neuropathy from a low b-12 which I get a shot once a month. I take 2 vitamin D's folic acid 4 a day. Poly neuropathy is nerve in my legs and feet making it a bit hard going upstairs which is all arms. My advice keep active work muscles and hopefully my nerves in the legs heal some percentage over time. I just started taking alpha- lipoid acid. I just recently started seeing a psychologist and he said do your homework and seek a second opinion cause if you work your muscles that could help nerves may 5 to 8 %. He said you have to be sure a 100 % what caused your neuropathy.

15 Replies

  • Hallo, I am the same - neuropathy in feet, lower legs and hands, but not diabetic. Unlike you, despite numerous blood tests, MRI scan, Cat scan etc. no cause has been found. I take B12, multi B vit and also alpha-lipoic acid (what dose do you take?). I do not have any muscle wastage, but do have continual uncomfortable feelings in my toes and feet, and that does make stairs a bit difficult - I have to hold on! I have good days and bad days, and really don't think that there is much more I can do about it, although yoga does seem to help. Anyway, good to know we're not alone!

  • I take 600 mg of alpha lipoic acid I started about a week ago and it is a low dosage but it might be increased. As far as my hands are concerned they are okay. I walk with leg braces to help the leg muscles and hopefully in time help the nerves heal a little in time. I use a stationary bike with an incline also to help my leg muscles. Yoga would not work for me my balance is not good. I have walker's for the house and use two canes outside to help. Down the road I am going to do my home work and seek another opinion and let that doctor make his own findings. My med's are a b-12 shot once a month, two vitamin d's one 400 units and the other 1,000 and calcium citrate 1x a day along with 4x a day folic acid.

  • Also had a number of blood test's m.r.i's and a spinal tap. I just did a Mri for my lower spine.

  • Also if I go upstairs it is all arm strength.

  • Hi, I haven't been on the website for awhile, but saw the replies to neuropathy. I have hereditary peripheral neuropathy, and have lived with it for 35 years. Every day I have to monitor my mobility so I can walk the next day. I was diagnosed in 1991 by Mayo Clinic, in Rochester, Minnesota. They told me to go home and read the book of Job, in the Bible, there was nothing that could be done, and I would have chronic pain for the rest of my life. They gave nothing for pain back then, because of the chance of addiction. I crawled on my hands and knees to take care of my young children, and crawled to get ready for work. Now I take meds for the pain, Duloxetine, Amitriptlyine, and Metanex, which is a B-12 complex. I have found that Lyrica has done wonders. Someone introduced me to cycling many years back, and I have ridden across states ,and in the Rocky Mountains of Canada, and Colorado. Everyone has to deal with the pain in their own way, but the more you can get away from the pain mentally the better. I try to give people hope, that the pain they feel today might not be the pain that they feel tomorrow. Hang in there, I have been where you are. I still have pain every single day, but I manage it the best I can. The best to you............Carla

  • Well I am glad you have found something that works for that being lyrica and wish you all the best in the future in handling your pain, mental health and neuropathy. I can't believe that the Mayo Clinic which is suppose to be the best at this couldn't help more. Keep the faith stay strong and all the best.😀

  • I have peripheral neuropathy caused by chemo for secondary breast cancer. I take morphine and GABAPENTON for pain. I just try and keep going. My hobby is my choir I just love it. Good luck to everybody.

  • I was on gabapentin that didn't do anything though I don't have pain, but all nerve damage in my legs and feet. Stay active and positive. All the best GREG!

  • It can be frustrating to think that you are the only one that has neuropathy for a different reason. In my case it started with a worn out lower back but really manifested from too many surgeries on my right knee. For someone who relied on an extremely high tolerance to pain being faced with uncontrolled pain was a new experience. But pain is a state of mind. The only thing I really struggle with is sleep but pain management is helping with that, without opioids.

  • I wish you all the best and health in the future and your right pain management does work. When I was told I had neuropathy a few years back anything I looked up or spoke with asked how are your diabetes doing and I said I do not have diabetes and for a time I thought I was the only one in the country non - diabetic. He told me from my germ and hiatal hernia that I also have caused it. So a shot once a month right into the blood stream. + two vitamin d's calcium citrate and folic acid 4 x a day

  • I don't think my neuropathy is hereditary, as nobody in my family tree ever had it. My stepfather had mild diabetic neuropathy, but that doesn't count. They keep trying to insist that my neuropathy is diabetic, even though I've shown them documantation that it was worked up by a neurologist in 1994, and no cause was found at the time. I had normal blood sugars going back at least to 1989. I recall blood sugars in the 1970s indicating hypoglycemia, not diabetes. In 2002, I was put on Lipitor for high cholesterol, (which IS hereditary, my birth father had it), and one year later I developed type II diabetes. Lipitor is known for doing that. I stopped the Lipitor and got my sugar under good control. I usually take a minimal dose of Glipizide, but there have been times over the years that they've had to take me off it because my sugars were too low. Do the math; well-established neuropathy in 1994, first sign of diabetes, 2003. I really doubt diabetes is the cause, but perhaps they are right in that the diabetes might be making it worse in recent years. In 2005, I was diagnosed with esophageal cancer, and had radiation, chemo and surgery, and I am "NED", (No Evidence of Disease) ever since. The neuropathy caused numbness, but not pain up until then, but after all of that it begain to be painful. Perhaps the chemo contributed to it? More recently (since 2011) I developed autonomic neuropathy as well, which is basically the same kind of neuropathy as the peripheral, but effecting the nerves in the torso that regulate blood pressure and other bodily functions. It's taken me six years to get that diagnosed. At first I was sent to a pulmonologist, because the initial complaint included the phrase "short of breath". There's NOTHING wrong with my lungs. Then they sent me to a cardiologist, because my symptoms also included rapid heart rate. There's nothing wrong with my heart either. It's just that when your blood pressure is 80/50, your brain isn't getting enough oxygen, and it sends signals to the heart and lungs to speed things up. There's also the fact that the surgeons (deliberately) cut part of my vagus nerve to stop my stomach muscles from contracting, since my stomach is now repositioned into my chest. So that could be a factor too. I recently, in my researches, discovered that high doses of vitamin B6 can cause neuropathy, and I WAS on very high doses of B6 in the late 1970s. I had been on the Atkins diet, which contains no grains, and I had gotten a deficiency, and the doctor put me on a high dose B6 pill. I think now that he should have just told me to get off that diet and eat some whole grain bread. In any case, the B6 supplement didn't have to be a whole gram, or whatever it was. But it's possible that was the cause. I have to take that information to the neurologist at my next visit. I guess my point is, keep pushing; keep digging; keep asking questions. Don't settle for getting the "brush-off" from doctors. The answers are out there, somewhere. Good luck.

    P.S., To whoever mentioned yoga, above; look for a "chair yoga" class. I do that twice a week. There is one lady in her 90s in the class who can't get out of the chair at all. I can't do a lot of the stand up stuff, so I stay in the chair for a lot of it. Others do get out of their chairs more than I do, to the extent that they feel able. Chair yoga is designed for the elderly or the disabled. A good instructor will help you adapt the poses to your disabilities.

  • You are totally right but first I wish you the best it sounds like you have been through a 15 round fight and then some. I was told I got this from a low b-12 which may be true cause I also have herd and hiatal hernia but I am in the process of doing my homework and down the road a second opinion. All the best of health . Greg !

  • Unfortunately most people dont get to the bottom of why they have non diabetic peripheral neuropathy so at least you know yours is B12. I find exercise is good and going to the gym has really helped. It also helps to keep feet warm, bed socks can be a great help.

  • Believe it or not I am still a little skeptical about it being b-12 defiency although I also have germ and a hiatal hernia. All the best and good health GREG 😀

  • Has anyone got peripheral neuropathy from having rheumatoid arthritis as this has been the only answer so far. Feel so down with it as it makes me unsteady and feel like my legs are so heavy. Dido

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