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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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

NJ Ed | @njed | Jun 22 8:07am

@joeys62 - I have axonal sensory motor (idiopathic) neuropathy but mine did not come on like a tidal wave as you are explaining. Mine took years to develop. I am curious to see what our mentors may suggest. I've heard of neuropathy coming on quickly and if doctors offer no explanation, they may not know. Unfortunately, for many, peripheral neuropathy is a mystery. Hope you get answers soon!!

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closer0043 | @closer0043 | Jun 22 8:12am

I was diagnosed with the same thing after my NCV/EMG. My whole body went numb on New Year’s Eve while lifting weights. I showed very little improvement for 5 months, but I am now seeing improvements. My toes are still numb, but they have been getting numb for over a year now. Like you, my neurologist is not very informative at all. I just saw him yesterday and he said he was pleased and not surprised that I am improving. I told him that he should have tried harder to convince me that I would improve at our visit over 3 months ago. He just kind of laughed and said come back to see him in a year. Frustrating!
Have you had any MRIs on your spine? I fully believe all of my leg weakness and numbness is from years of playing baseball and lifting weights. I have severe spinal stenosis in my lower back and more issues in my thoracic and cervical too. My pinky fingers still get numb occasionally especially when my arm is over my head when I sleep. When did your numbness start?
I know where you are right now. I was absolutely convinced I had ALS, and those dang neurologist do very little to reassure patients they have something else that my improve or be treatable. Hang in there, and force yourself to keep moving. I know how hard it is. My muscles were fatigued so much in the beginning that I would usually quit after half of my warm up sets. I basically never left my house for 4 months unless I had to.
I would make an appointment with a neurosurgeon or orthopedic spine doctor. Click on my name to read my other posts from the past few months. I have them posted in the spine health section.

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1 reply
celia16 | @celia16 | Jun 22 10:12am

I’m so sorry you are going through this. I am being evaluated now. Not many answers right now. It’s scary.

Are you able to send your doctor a private message through your online portal?

What did your EMG tests reveal?

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raysbabygirl | @raysbabygirl | Jun 22 4:46pm

I have mixed Pilyneuropathy. Not sure what that means?

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duquer | @duquer | Jun 23 4:31am

I have it, I got excellent relief with Sanexas. See my story
https://connect.mayoclinic.org/comment/645606/

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celia16 | @celia16 | Jun 23 7:11am
In reply to @closer0043 "I was diagnosed with the same thing after my NCV/EMG. My whole body went numb on..." + (show)
@closer0043

I was diagnosed with the same thing after my NCV/EMG. My whole body went numb on New Year’s Eve while lifting weights. I showed very little improvement for 5 months, but I am now seeing improvements. My toes are still numb, but they have been getting numb for over a year now. Like you, my neurologist is not very informative at all. I just saw him yesterday and he said he was pleased and not surprised that I am improving. I told him that he should have tried harder to convince me that I would improve at our visit over 3 months ago. He just kind of laughed and said come back to see him in a year. Frustrating!
Have you had any MRIs on your spine? I fully believe all of my leg weakness and numbness is from years of playing baseball and lifting weights. I have severe spinal stenosis in my lower back and more issues in my thoracic and cervical too. My pinky fingers still get numb occasionally especially when my arm is over my head when I sleep. When did your numbness start?
I know where you are right now. I was absolutely convinced I had ALS, and those dang neurologist do very little to reassure patients they have something else that my improve or be treatable. Hang in there, and force yourself to keep moving. I know how hard it is. My muscles were fatigued so much in the beginning that I would usually quit after half of my warm up sets. I basically never left my house for 4 months unless I had to.
I would make an appointment with a neurosurgeon or orthopedic spine doctor. Click on my name to read my other posts from the past few months. I have them posted in the spine health section.

Jump to this post

What were your EMG results?

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1 reply
closer0043 | @closer0043 | Jun 23 9:11am

My EMG was clean. My NCV showed some slow velocities in my right arm and ankles. Were you asking me or the original poster?

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1 reply
celia16 | @celia16 | Jun 23 10:03am
In reply to @closer0043 "My EMG was clean. My NCV showed some slow velocities in my right arm and ankles...." + (show)
@closer0043

My EMG was clean. My NCV showed some slow velocities in my right arm and ankles. Were you asking me or the original poster?

Jump to this post

You. Thanks.

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 23 2:36pm

Hello @joeys62, Searching Google for medical information can be a little scary at times. There is another discussion that you might find helpful to learn what others have shared.

-- Sensory axonal polyneuropathy Results: https://connect.mayoclinic.org/discussion/sensory-axonal-polyneuropathy-results/

Also, you might want to check out the following sites for information on neuropathy.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

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artemis1886 | @artemis1886 | Jun 23 11:11pm

I have severe axonal sensorimotor polyneuropathy mine is autoimmune.
What was not explained tome is for years I have had tremors in my legs and hands. It is caused by the motor neuropathy. I cant carry a plate of food or drink water or anything else. My cups have to have lids where the water does not spill. I live in Texas and had to go to Boston to find out the truth. The motor neuropathy according to Dr Oaklander a research neurologist told me is the motor neuropathy affects your balance more.
All the information just says you will have movement disorders and no one put two and two together before I got to Boston. I dont feel my hands constantly cutting them vooking and getting stitches. My feet are numb but feel nerve pain at times. I am loosing muscle in the bottom of my feet so it literally feels like I am walking on bones and the MRIs of my feet show the same thing. I have horrendous swelling of feet, legs and hands.

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