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Looking for someone who has axonal sensorimotor polyneuropathy

Neuropathy | Last Active: Jun 30 6:08am | Replies (24)
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@artemis1886

I was told I needed a neuromuscular neurologist that specializes in severe axonal sensorimotor neuropathy. Each neurologist specializes in different things. I had to learn the hard way after mine passed away after 20 years. Some specialize in Parkinson’s , some epilepsy and so forth. Look at the neurologist website to see what they specialize in.

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minfromtexas | @minfromtexas | Jun 29 8:51am

Thanks for your reply. I was fortunate to be referred to a local neurologist who not only has a practice, but also teaches at the local university and is involved in clinical trials. Once he diagnosed me, I was passed on to another doc is his practice for follow up and treatment. Initially I received IVIG which did slow the progression but in 2024, Medicare reconsidered and refused to honor future IVIG treatments. Right now, I'm mobile but the symptoms continue to worsen. A spinal cord stimulator helps and I'm on 1200 mg Gabapentin. My doc tells me that at this point all he can do is treat the symptoms. Ugh...whoda' thought I'd be living with this after being an athlete for most of my adult life.

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