Looking for someone who has axonal sensorimotor polyneuropathy

I have severe axonal sensorimotor polyneuropathy. I have lost feeling in my legs and hands. Constantly, cutting myself when I cook. The motor neuropathy has caused me to have really bad tremors in my legs and hands. I had biopsies to check for small fiber neuropathy. Tested positive so I have also been diagnosed with autonomic neuropathy in my heart, bladder and so forth. My thermoregulator in my brain doesn’t work so the majority of the time I am cold. I carry a cardigan and blanket in my car. It also can cause hammertoes in which I ended up with a blister on my foot and almost lost my toe. The toe still has not healed. The neuropathy pain has moved into my ribs and it’s really annoying. I am now also being tested for CIDP because my neuropathy is autoimmune but a strong family history of RA. My problems started in 2002. My ANA, sed rate, complement C is all elevated for over three years.
Doctors are not up front until something else goes wrong. They are also testing me for seronegative Sjögren’s syndrome (misspelled).
I have to use a cup with a lid otherwise I spill my drink all over me from the tremors. I also have a hard time not choking even when just drinking water. It also causes gastroparesis. My recommendation is stop caffeine, alcohol (I don’t drink so not a problem), sugar and red meat. With the gastroparesis this causes red meat sits on your stomach forever. It’s been proven to take up to three days to digest.

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.

IVIG therapy takes at least six months to start working. Once, on it you can’t stop if you do the neuropathy progresses really fast. I was on it from age 10+18. I don’t know which state you live in but medical marijuana has been shown to do nerve regeneration. That might be something to try. I live in Texas so it’s a big no. We are in Germany but I go back a lot. We are looking at moving back so we are looking at possibility moving to a marijuana state. Yesterday, was really bad day for me I kept loosing my balance and trying to fall. My husband kept catching me. On those days I prefer to stay home.. Yet we were out and about at the grocery store. My husband bought me some fresh squeezed pomegranate juice and we picked up some Asian food to eat.
Mine is autoimmune neuropathy my Ana, S.E.C. rate, crp, and complement C have all been elevated. Mine has progressed and now I am being tested for CDIP. Not looking forward to the spinal tap.
What sport did you used to play.
Listen to Dr Anne Oaklander’s YouTube postings. She is a research neurologist out of Boston. She has been researching neuropathy since before 2015 and so has her daughter. I can’t take lyrica or neurotin. I am allergic to both of them.
They also can cause memory loss drove me crazy when I could not remember where I put my car keys. They will mot let me use the restroom for two days. I swell up huge.
Have your neurologist check for small fiber neuropathy normally Medicare\Medicaide will approve IVIG therapy if you have both.

Have you tried Sanexas?

Here is a link to my story, if you’re interested.