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.
https://connect.mayoclinic.org/comment/645606/

I have CIAP which is the new designation for Chronic and severe Sensorimotor Axonal Polyneuropathy. (no known cause). I originally was diagnosed in 2017 at Weill Cornell Hospital in Manhattan. My mothers family has a long history of CMT (6 generations) and I started experiencing CMT symptoms when I turned 61. I have three daughters and one son and my second oldest daughter started showing CMT symptoms at age 45. My Neurologist contacted the genetics department at Weill Cornell and they set up EMG and needle EMG studies for all of us along with a Whole Exome Sequencing Test which looks at 20,000 genes. All of my children and I tested positive positive for CMT. I tested positive for chronic and severe Sensorimotor Axonsonal PN (now referred to as CIAP). I also tested positive as a SMA and GAN Carrier. My children did not inherit those mutations from me so the SMA and GAN mutations I have will die with me (YEAH). Currently, I have almost no sensation in my feet, legs, hands and arms. The numbness is now in my shoulders and in my jaw and teeth. I have major issues with balance and walking is very difficult. I have to use a cane at all times. Falling is just a normal thing in my life. In 2018 was diagnosed with MDS/MPN/MF with Polycythemia Vera which requires monthly labs, a phlebotomy and infusions. Six months ago I was diagnosed with insulin resistance which means my cells don't absorb insulin properly. The issue here is my pancreas produced 3x the insulin it should. Normally, an individual with insulin resistance has diabetes or pre-diabetes. I have no evidence of diabetes or pre-diabetes which indicates something else is going on. My neurologist told me years ago that CIAP is incurable and not treatable and that once it attacks your core it will kill you. How wonderful. If the leukemia doesn't kill me first the CIAP will end things for me. Can’t wait to see which one wins. What can I say? It is what it is!!!

Hi two days ago I was diagnosed with severe axonal sensory polyneuropathy and peroneal palsy after having an EMG. I don't know how to process this because for almost 10 years I was told it was all Fibromyalgia. Almost 10 years of basically being told the pain is all in my head. I'm currently on the max doses of gabapentain and due to a recent increase in pain, numbness and tingling I'm also on tramadol which does absolutely nothing. But I have been so trained to DEAL with it I'm not sure how to ask for anything stronger. I'm so angry!

Welcome @kei33, It's OK to be angry. Dealing daily with pain for so long is just plain awful. I think what might help is learning as much as you can about your condition may help you learn about new or alternative treatments that provide some relief. I'm sure that you are not alone and there are other members here on Connect that can relate to what your symptoms. There does seem to be a connection between nerve damage and Fibromyalgia. Here's some information that might help explain it - https://www.fibromyalgiafund.org/small-nerve-fiber-damage-in-fibromyalgia/.

Do your doctors think that the new diagnosis of severe axonal sensory polyneuropathy and peroneal palsy is in addition to the Fibromyalgia or that you don't have Fibromyalgia?

I feel your pain. Diagnosed with “idiopathic axonal peripheral neuropathy” in 2019. Complaint was numbness in feet, no pain.
Neurologist in Florida performed EMG/NCV. He threw his hands up and said “you have too many disconnects and I can’t help you”. What a jerk.

Jump ahead to this year and the numbness was creeping up my legs towards below the knees. Still no pain. New Neuroloogist in Indiana redid EMG/NCV, Neuropathy blood panel, MRI brain, MRI spine (I have spinal stenosis and have had two laminectomies 20 years prior). Also had Neurosurgey consult. Lastly a lumbar puncture showed very high Protein in CSF confirming a diagnosis of CIDP. I take weekly injections of Vyvgart Hytrulo. #7 will be this week. There is no cure. The aim is to stop the progress of the disease and ease symptoms.
I walk with a cane for stability as my balance is awful. I also tried two months PT to strengthen my core. I go to the Y four times a week and use a recumbent eliptical for 30 minutes. Not done yet: I also have essential tremor and heart failure. The bottom line is to never give up. I’m 75, quite mobile and out there everyday. In closing, be your own advocate and push through it. Happy Holidays!

Acute Axonal Sensory Neuropathy? I have it also with CIDP. I’ve kept it at bay with some progress with Hizentra SCIG and PT.