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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 2 days ago | Replies (6021)

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@magnum52

I was diagnosed with idiopathic mall fiber neuropathy about 5 years ago. I have seen 4 different neurologists, and 2 neurosurgeons. I have had every test in the books, and they all come back normal except for the skin biopsy and the sweat test. I spent a week at Mayo in Rochester a few weeks ago, and after MANY tests they still come back with idiopathic small fiber neuropathy. My pain is burning in both feet. I am taking a small dose of gabapentin, and Cymbalta 60mg. Both are basically useless. I was referred to Mayo’s Pain Clinic. I have opted for neuromodulation using a stimulator HF10 or a dorsal root ganglion stimulator. More than likely it will be the DRG.

Nothing works well for neuropathy, and research seems to be only for pain management. It’s cannot be cured. Neuromodulation is my last hope. For some, it can help tremendously. Since my pain is localized I have high hopes. Not sure if I will have it done at Mayo or at another pain clinic. It such an easy thing to do to see if it works BEFORE it’s permanently implanted. This should be interesting.

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Replies to "I was diagnosed with idiopathic mall fiber neuropathy about 5 years ago. I have seen 4..."

Having worked in Hospice nursing I learned some things about pain meds. There are all kinds of pain meds. Not all meds work the same for everybody. Pain is individualized. My nerve biopsy had very low numbers. So what happened to me was rapid. I am not quite sure what my next step is yet. I have been researching my diagnosis. I already stopped taking two of my meds. I am fast becoming not a fan of medications. I sincerely hope the Neuromodulation works for you.