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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@steeldove

@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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Replies to "@airpod @johnbishop I've come to realize that seeing neurologists for neuropathy is a waste of time..."

@steeldove, I hope the spinal cord stimulator works for you if you choose that route. It is a choice we all have to make when faced with the reality that neuropathy has no cure unless of course it's caused by nerve damage or compression that can be fixed by surgery (IMHO). So the doctors/neurologists treat the pain symptoms with drugs that basically tell the brain to ignore the nerve signals coming from the damaged nerves. I may be over simplifying it and it's just my non medical opinion but I haven't found any evidence to change my mind. Because I only have numbness I chose the supplements route to try and provide the cellular nutrition the nerves need to heal and possibly get back to normal. There are a lot of unknowns no matter what choices we make which is why it's really great that we can share patient experiences and learn from each other.

What kind of concerns do you have about having the SCS implanted?