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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Jan 8 7:56am | Replies (6210)Comment receiving replies
Thank you for responding. In still learning to maneuver about on this site😁. I have not had the biopsy test and I was not very confident with the neurologist I saw. When I first mentioned the pins and needles and burning the Dr just said perephial neuropathy and Gabapentin then he was finished. I'm trying to Google and seek ways I can find out exactly what I have and what kind of Dr I need to see. I called another neurologist but I have to have my Dr refer me. It's just so frustrating but I need to know the cause.. I think I can handle it better if I know that I've been properly tested and I know what I'm dealing with. Right Now it keeps me anxious. Will I lose the ability to walk? Will the numbness get worse? Will I lose control? These are questions that stays in the back of my mind.
Replies to "Thank you for responding. In still learning to maneuver about on this site😁. I have not..."
@airpod I am diagnosed with pheripherial neuropathy. I had the test done and it was bye "Wear shoes at all times" "you habe pheripherial neuropathy. Now my pain managment doctor says she thinks it is poly neuropathy. What/ how much difference and do I have both? Thank you.
@airpod @johnbishop I've come to realize that seeing neurologists for neuropathy is a waste of time as they seem to do little beyond offering Gabapentin, Lyrica and Cymbalta. I suspect that many members of MayoConnect are more knowledgeable about neuropathy than the average neurologist. The only neurologist that really helped me was a Russian-trained female neurologist I saw when I was living in Massachusetts after being diagnosed with SFN at Mayo Clinic (January 2017, six months after I first experienced symptoms in my feet). She admitted that very little was known about SFN, its causes and treatments. We had serious discussions, and she recognized that I was willing to do whatever might be needed to find the help I needed. When she encouraged me to get an appointment with Dr. Louise Oaklander (the SFN "guru") in Boston, I began the process. Unfortunately, before I was able to get that appointment, I moved to Missouri. Then I waited months for an appointment with a neurologist at Washington University Medical School in St. Louis. Total waste of time: More tests, try Gabapentin, Lyrica or Cymbalta and see a movement disorders neurologist. Then another Mayo neurologist who said my problem was in my cervical spine and suggested surgery, adding that I didn't have neuropathy!!! Meanwhile, neuropathy has overtaken most of my body. I'd about given up thinking I'd find the help I needed at Mayo Clinic until earlier this year when I decided that I needed to find Pain Medicine doctors at Mayo, which I have done. I saw them last summer, and recently returned from Rochester, MN, where I underwent a 7-day trial with a spinal cord stimulator. Now I must decide if I want a SCS implanted in my body.
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@airpod - Here's a website you might want to bookmark for neuropathy - helps answer a lot of neuropathy questions.
Neuropathy Commons -- https://neuropathycommons.org/