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Looking for someone who has axonal sensorimotor polyneuropathy

Posted by joeys62 @joeys62, Jun 22 2:41am

Anyone had to deal with Axonal Sensory Polyneuropathy? According to EMG, two neurologist later, total numbness in lower legs (to the point I cannot stand or walk) and hands with numbness progressing up my arms, legs and into torso. Neurologist tells me nothing. I have had no idea what to expect and if course can't get back into see Neurologist for weeks. Every day is a little worse. Googling is frightening. Looking for someone who has some experience with this type of neuropathy.

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artemis1886 | @artemis1886 | Jun 29 7:36am

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.

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minfromtexas | @minfromtexas | Jun 29 8:51am
In reply to @artemis1886 "I was told I needed a neuromuscular neurologist that specializes in severe axonal sensorimotor neuropathy. Each..." + (show)
@artemis1886

I was told I needed a neuromuscular neurologist that specializes in severe axonal sensorimotor neuropathy. Each neurologist specializes in different things. I had to learn the hard way after mine passed away after 20 years. Some specialize in Parkinson’s , some epilepsy and so forth. Look at the neurologist website to see what they specialize in.

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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.

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artemis1886 | @artemis1886 | Jun 29 9:25pm

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.

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duquer | @duquer | Jun 30 6:08am
In reply to @dbeshears1 "Mine came on suddenly too, “coincidentally “ at the same time as an infection - 10..." + (show)
@dbeshears1

Mine came on suddenly too, “coincidentally “ at the same time as an infection - 10 days from first sign of weakness to wheelchair, in which I pretty much lost all neuromuscular connection from knees down & elbows down. After 7 years, I still have no type of definitive cause for my axonal sensorimotor peripheral neuropathy but Duke thinks it “could” have been due to a post- infection disorder similar to Guillain Barre, but Guillain Barre itself was inconclusive.

At the beginning of the 7 year journey, the doctors ran a standard barrage of bloodwork that ruled out everything they knew how to test in blood. I felt the process of helping me find a reason was very slow, and couldn’t understand the medical field not having the same urgency as me in getting me back on my feet, getting my health restored & being able to exercise again, and getting me back to work so I could financially help support my family (and not need federal unemployment at 51 yrs of age!). My first thought was thinking of my disease as a cancer, that early detection and identification was key to getting cured! It took a long time during this slow 7 years to accept and believe that they just really don’t know, and don’t know what else to do. I think it’s perfectly normal (and important) though to find out as much as you can from others and research to make sure you are getting the right and thorough tests done, as slow as that process may be.

I’ve moved to 3 different homes and had to change all doctors over these seven years, but the main thing I’m grateful for from my first Neurologist was instilling the importance of physical therapy in me. It was very intense at first (one month in a rehab home), but got me out of the wheelchair and taught me how to keep the best muscle strength I could to get along the best I could in life. I accept I won’t hop, skip, climb or run again or climb stairs without help, and I will drop things, have hand weakness & be slow at writing & typing; but I can walk/waddle independently short distances now and can be self sufficient enough to live alone if I had to. It’s work, but my new “exercise” is doing as much independent PT exercises I can, and I get my doctors to prescribe professional PT sessions when I feel I need refreshers or revaluation to see if my exercises are still aligned to my changing needs or condition.

Secondly, I’m grateful I found this Mayo forum. I’m sad it took me a few years to stumble onto the site, and I wish I’d found it earlier in my journey, or that my non-Mayo doctors could have led me to it. It’s on here than I really learned how to LIVE with this thing. There’s an endless amount of experience, trials & errors, and research already done by members and is a great sounding board. It can help save us time and energy that we need to use to keep our bodies as healthy as we can. Don’t give up hope, but try to remain positive, as I regret the energy I wasted on letting negativity steer me at times. I know that’s part of the grieving process, but while we wait this thing out and come to terms with it, I hope you explore a lot the ideas on here, realizing that we don’t all respond the same to the suggestions and medications people may talk about, but I hope you find things that you find work for you!

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Have you tried Sanexas?

Here is a link to my story, if you’re interested.
https://connect.mayoclinic.org/comment/645606/

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