← Return to Axonal Sensorimotor Polyneuropathy: Looking for someone to relate

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@laurask

Hey @rwinney! I’ll be saying this 100 times but that’s okay. I truly appreciate your kind response. I’d love to hear more about your story. I am so sad to know that you are going through this battle as well but it means that you’re a trooper to say the least.

Well, during blood tests at my initial hospital stay, I tested negative for absolutely everything under the sun. I had an MRI of my brain and spine. CT scans. Absolutely normal to my surprise. The only test that proved my (somewhat) sanity was the EMG. This showed chronic nerve degeneration which finally explained why I couldn’t feel the majority of my legs and hands. I also had a nerve biopsy done on my left ankle which also showed extreme axonal damage. Throughout these tests, I did five treatments of plasmapheresis, five treatments of IVIG, and three treatments of steroids. Absolutely no change. Duke suspected Beriberi to be the cause because of my low vitamin levels but my neurologist in Greenville is far from convinced. I am currently on the waiting list for the neurology department at Mayo. Other than that, I don’t have a plan.

Medication wise, I take the highest dose of gabapentin (my best friend) five times a day, a muscle spasm medication three times a day, oxy three times a day, as well as a handful of other nerve pain assistive medications. I feel that the best relief comes from a steaming hot shower. I’ve had one appointment at a pain clinic and waiting for my follow up to see what the doctor wants to do. I’ll keep you updated!

Thank you doesn’t begin to express my gratitude for showing me support and kindness during this time. You’re wonderful!

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Replies to "Hey @rwinney! I’ll be saying this 100 times but that’s okay. I truly appreciate your kind..."

Awww girl, @laurask, thank you…I feel your fighting spirit and maturity.

I agree on the hot shower, so therapeutic. I now use a shower mat for better stability and comfort. Although I can't be in long bc of pain /discomfort, heat is calming to overactive nerves. My journey has most of your pieces but, spanned over a few years instead of a month in the hospital. A longer version of putting a puzzle together, that's all. Some of my pieces still don't fit, like yours!

I'm glad your EMG provided something solid. It does ease the mind a bit when you grab a hold of proof. I'm also happy to hear you are finding pain management while the investigation continues.

Keep hope alive… with optimism and your own advocacy. Glad to meet you and I look forward to positive updates.
Rachel