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Axonal Sensorimotor Polyneuropathy: Looking for someone to relate

Neuropathy | Last Active: Jun 27, 2023 | Replies (27)
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@rwinney

Hey Laura @laurask, I'm Rachel and am very glad you found us here on Connect! I definitely know you will benefit by partaking and learning from others here, I certainly do.

You speak my language with your diagnosis and struggles, I'm so sorry for that. It breaks my heart that you have been handed this card at such a young age. I've been at it for a few years now, since age 46.

I relate to your description of pain as I have progressive small fiber polyneuropathy (motor and sensory). It's a real challenge to try and use a body that feels like you've climbed Mount Everest daily! 😣

If you are up for sharing, I'd also like to hear more about your diagnosis path and what plan, going forward, your Drs. have for you. What institutions have you visited? Are you on any medication that you feel helps in some way?

I'd imagine your past 8 months have been a whirlwind. I'm heartbroken right along side you but know that with support, care and compassion... you (we) will get through this life altering experience one way or another. Be well.
Rachel

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Replies to "Hey Laura @laurask, I'm Rachel and am very glad you found us here on Connect! I..."
Laura | @laurask | Mar 17, 2020

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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