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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 3 days ago | Replies (6026)
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@jeffrapp

Thanks, John! @johnbishop.
I'd classify your response as an enthusiastic "perhaps".
I also have small fiber PN like you do, but mine is quite painful. Mine was diagnosed with a skin biopsy, so there is anatomic evidence of nerve damage. This leads me to question any treatment which purports to "cure" the disease, which would require evidence of the nerves growing back, or at least a halt in progression. Treatments like Lyrica are not supposed to be curative, so they don't count in this discussion.
I suppose the only way to prove something works is to take a treatment for x months (3, 6, 12? Again, nobody knows), then repeat the nerve biopsy. I don't have any indication that this approach has or is being tried. It would be an expensive, time consuming and somewhat painful experiment.
Thanks again John for your hard and useful work on this and other topics.
Jeff

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Replies to "Thanks, John! @johnbishop. I'd classify your response as an enthusiastic "perhaps". I also have small fiber..."
John, Volunteer Mentor | @johnbishop | Apr 21, 2020

Hi Jeff @jeffrapp - I should add that even the members of the protocol group don't call it a cure but say it's a drug free treatment for rolling back the symptoms of PN. When the new 525 was being developed they asked members who have shared their success story in the group to send in a 1 to 2 minute video of their success with the protocol. I was hoping they would add these to the website so that non Facebook folks could relate to the different diagnosis of each the members sharing and how it has helped them. They are having a live Facebook discussion tomorrow evening at 6pm so I will try to see where that is at and if there is a possibility they can store the videos where a link could be shared to view them.
John

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Rachel, Volunteer Mentor | @rwinney | Apr 21, 2020

Jeff - I was diagnosed with Small Fiber Polyneuropathy via skin punch biopsy as well. Mine was from a B12 deficiency to which my Dr said its possible, maybe, that my nerves could regenerate in over a 2-3 year span. Symptoms for 3 1/2 years, diagnosis a year, no improvement just decline. I mean I guess I will still keep hope alive. Every once in a while I may have a few hour stretch where all is calm in my body and I think...THIS IS IT! But, not.

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