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Idiopathic Small Fiber Neuropathy Research

Neuropathy | Last Active: Jun 19 12:24pm | Replies (135)

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@runnergirl

@dbeshears1 I'm sorry to hear you're not getting the help or compassion you deserve. If you want to switch neurologists, go with what you want to do. It's your body, your condition, and you have to be your own advocate. I've seen at least somewhere between 10 and 13 neurologists over the past 15 years of dealing with my condition. I wasn't going to stop until I found someone who not only knew what he (or she) was doing, but was also a decent communicator and also compassionate. It took me 13 years to find this person. He is not in my hometown, so I need to either meet via video conferencing or traveling to his office, but it's been worth it.

I did find that all of the others just didn't have the experience with this condition, or, as we all know, there's just not enough research. Here's a link to the Stuff That Works site: https://www.stuffthatworks.health/ We all need to speak up about what we need to help make our lives better.

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Replies to "@dbeshears1 I'm sorry to hear you're not getting the help or compassion you deserve. If you..."

For some reason, the problem of neuropathy, any kind of neuropathy, has sort of been pushed to the back burner or pharma R&D. I can say the same thing about pain. My industry has let the public down tremendously in the area of non-opioid pain treatment. Also, my guess is that non-neurology residents get about 5 minutes of instruction about neuropathy, if that.

Idiopathic SFN is particularly frustrating because most of the neuropathy studies deal with the more “popular” types of neuropathy. I am still holding a slight ray of hope that my DRG stimulator trial will go well, but I wouldn’t bet money on it.

If anyone knows of any pharmaceutical product that is close to completing a Phase III trial(s), post it here. Hang in there everyone!