Looking for someone who has axonal sensorimotor polyneuropathy

What were your EMG results?

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.

I was diagnosed about 3 years ago. The symptom that started it for me was severe cramping in my calves and an overall fatigue in my legs. I started the process of getting a vague diagnosis with a doctor who was not forthcoming with information. She wanted to throw drugs at me without knowing for sure what was going on. After a few visits where I felt unseen and lost confidence in her skills, at my request, she referred me to another neurologist who is known in the community for his diagnostic skills. Long story short, I was dx with Sensory motor axonal neuropathy. Eventually I received a spinal cord stimulator which continues to help with symptoms. I also take 800 mg Gabapentin nightly, a muscle relaxer & Vit B. For now at least, symptoms are managed and there really is no pain, just discomfort. Wishing you the best. I'd search for another neurologist who is more forthcoming and responsive to your needs.

Have you heard about Sanexas?

No. I know that lost of folks have good responses to these sorts of things, but I'm a Western Medicine type o' gal.

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!

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!

I was diagnosed about 3 years ago. The symptom that started it for me was severe cramping in my calves and an overall fatigue in my legs. I started the process of getting a vague diagnosis with a doctor who was not forthcoming with information. She wanted to throw drugs at me without knowing for sure what was going on. After a few visits where I felt unseen and lost confidence in her skills, at my request, she referred me to another neurologist who is known in the community for his diagnostic skills. Long story short, I was dx with Sensory motor axonal neuropathy. Eventually I received a spinal cord stimulator which continues to help with symptoms. I also take 800 mg Gabapentin nightly, a muscle relaxer & Vit B. For now at least, symptoms are managed and there really is no pain, just discomfort. Wishing you the best. I'd search for another neurologist who is more forthcoming and responsive to your needs.