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Spreading Sensory Peripheral Neuropathy - What next?

Neuropathy | Last Active: Jun 17 6:05am | Replies (30)
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@minfromtexas

'What's next', my question exactly. I was diagnosed in the spring of 2020 with Idiopathic Sensory Motor Axonal Neuropathy. As a long distance cyclist for years, I considered myself somewhat of an athlete. It's taken me a long time to accept this new reality and my new identity. There is so much that the doctors don't know, very much in contrast to their projections as the great prognosticators. In my case, I've received no specific guesses of what may be next, just that there will be a decline. So, I take my gabapentin (side effects and all, still worth the relief it provides) and have learned to be grateful for what I can do. I wish you the best. Maybe not knowing exactly what tomorrow may bring is a kind of gift as it keeps hope alive.

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Replies to "'What's next', my question exactly. I was diagnosed in the spring of 2020 with Idiopathic Sensory..."
tomvan | @tomvan | Jun 16 6:01pm

No Balance since overdose in Hospital 2009. I did not believe, so I saw 6 ENTs All gave the same diag "Ireversable Bilateral Vestibulopathy" It has been to Co
4085 miles in 60 days. Now I'm 85 about deaf, NO Balance, Arthritis. God loves me

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NJ Ed | @njed | Jun 17 6:05am

@minfromtexas - Same here. Feb of 2020, went to Mayo in MN and diagnosis was identical to yours. I have both small and large fiber. Could not guess at cause but suggested perhaps some genetic testing. My wife and I talked it over and decided against it. Like you, I was active which has declined in last 4 years. I do remain as active as I can which is a challenge having poor balance. You are right, not knowing how we will be in a year from now does keep us going. I feel someday, the medical community will figure this out.

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