Patient Comments: Peripheral Neuropathy - Experience

Please describe your experience with peripheral neuropathy.

Comment from: Jenie, 75 or over Female (Patient) Published: May 26

I have neuropathy in my left arm and hand. This was caused by radiation for breast cancer over 40 years ago. Radiation (the old cobalt kind) caused major scarring in the shoulder and axillary area which destroyed both nerves and arteries. Fortunately, I was able to have vascular surgery to restore blood supply. The peripheral neuropathy is apparently mostly autonomic and non-responsive to pain medication. It, at worst, is an intense burning pain, almost like my hand is on a burning iron. The worst pain was 30 years ago, and after I had done some heavy lifting which I should not have done. My neurosurgeon ordered autonomic nerve blocks. First 2 did little. Third reduced pain by about 50 percent, and that lasted. After that, physical therapy to restore function, and paying attention to weight limitations and not stretching the arm. Things got better. There is almost always some minor pain, but I seem to have learned how to ignore it for the most part, and go on with my life. Sometimes, mostly at night, it seems worse, but usually I can get beyond it and fall asleep. I do find hydration important. It helps. I wish I could say I found a cure, but not true. I have found a place with minimal pain and ability to function, and I am grateful for that. I have loss of function and strength in left hand, but it's a minor problem.

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Comment from: Chelquilts, 65-74 Female (Patient) Published: May 17

I've been diagnosed with peripheral neuropathy for almost a month now. Gabapentin is prescribed, and I find it helps my feet and legs. I need to increase dosage slowly, so am now up to 400 mg a night. Doctor wants to plateau at 500 with 5th pill taken in the afternoon. He also told me some people need to take up to 1800 mg to get relief.

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Comment from: Terry, 55-64 Female (Patient) Published: April 14

I was diagnosed with idiopathic peripheral neuropathy (PN) by a neurologist. I had a B12 level of 150. Later on I discovered this was actually low although I had been told it was normal. I have joined a B12 deficiency support group and a lot of people in the group with neurological symptoms were misdiagnosed. Anything under 300 with symptoms should be further assessed (methylmalonic acid or homocysteine test). Furthermore if you have neurological symptoms with B12 deficiency you need to have frequent injections; every other day until no further improvement of neuro symptoms. A lot of us self-inject so we can get proper treatment. A lot of doctors don't know much about vitamin B12 deficiency.

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Comment from: mdstjohn, 45-54 Male (Patient) Published: March 08

I have diabetic peripheral neuropathy. My symptoms appeared last May. It started with some pain and my left leg not doing what I asked it to do. I fell and gave myself a nice shiner and hurt my hands. This progressed where now I have constant pain in my left foot and pins and needles in my left leg, oh, and I have shooting pain in my big toe and alternatively my middle toes. I was on Neurontin and gabapentin in November and December, the only pain medication that made the pain bearable was hydrocodone (Vicodin) during that time. In mid-January my doctor switched me to Lyrica and the shooting pain went from every few minutes to every few hours. I still take Vicodin occasionally and take the maximum dose of tramadol. I still have pain but have to balance pain medicines with being able to work. I have had struggles with the disability management and am currently back at work, though I really shouldn't be. I would suggest for those having struggles with your doctor to get a new doctor until you feel it is under control. My doctor has had this condition, although less severe, and understands the pain. My best for the others struggling with this, it is painful and depressing.

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Comment from: Gabrielle, 55-64 Female (Patient) Published: March 01

If your vitamin B12 serum levels are anything below 400 ng/L consider this could be your problem. There's more and more evidence that the low normal levels actually indicate a deficiency. There are lots of reasons why you could be low in B12 especially if you are over 60. I have peripheral neuropathy and because I was low normal the neurologist didn't consider B12. Luckily my general physician was willing to give me B12 injections. I'm just beginning the treatment of B12 injections and there might be permanent damage to the nerves but certainly my other symptoms are already better; sore tongue, dizziness, extreme fatigue, and depression.

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