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Your Thoughts on a Foundation for Small-Fiber and Autonomic Neuropathy

Posted by cyp238ress @cyp238ress, Jan 23 9:53am

I have suffered from idiopathic small-fiber neuropathy for 30 years now (I'm currently 54). I have given thought over the past couple of years to starting a foundation dedicated to small-fiber and autonomic neuropathy research and advocacy. I find it completely unacceptable that the medical establishment is still doling out gabapentin as a first-line treatment, a drug that was approved in 1993. What are your thoughts on this, any advice, and would you support this cause?

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daj3333 | @daj3333 | Feb 7 10:29am
In reply to @johnbishop "Just saw this Nov 2023 research article in my Foundation for Peripheral Neuropathy email newsletter. ---..." + (show)
@johnbishop

Just saw this Nov 2023 research article in my Foundation for Peripheral Neuropathy email newsletter.

--- Plasma proteomic analysis on neuropathic pain in idiopathic peripheral neuropathy patients: https://onlinelibrary.wiley.com/doi/10.1111/jns.12606

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One small step but doesn’t sound like a breakthrough. Long way to go in their studies.

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cyp238ress | @cyp238ress | Feb 7 10:51am

Agreed. The human neurological system is the final frontier in medicine. That's not to say that every other system has been solved - far from it. But at least there have been major advancements in care in areas such as cancer, hepatitis C, etc. While I'm thrilled for those patient groups, it is hard to be in the group that is still being fed gabapentin when that medication was approved by the FDA in 1993. I just find that totally unacceptable, regardless of the reasons. We as patients must demand better, and that can only happen with resources and advocacy.

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