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!