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Axonal peripheral neuropathy: Finally, a diagnosis!
Neuropathy | Last Active: Oct 22, 2025 | Replies (159)Comment receiving replies
To Ray - In Feb 2020 Mayo in MN gave me the idiopathic axonal sensorimotor PN diagnosis. They did MANY tests. I went to Mayo with the idea in mind OK, what can this be? It was explained to me that with this type of neuropathy, there is not much that can be done with respect to any meds helping this condition. I experience no pain, only that tight sock feeling, numbness toes to shins and very poor balance and bi-later drop foot. One neurologist said to me I want you to keep moving. Keep walking. I never forgot what he said and that was in 2017. The diagnosis of axonal PN now means we have to figure out how to do things differently ... not stop doing things. I feel remaining active is vital and yes, not easy. I walk slow with supports for drop foot and at times with a cane but my wife and I continue to travel each month to our vacation home and I'm determined to keep moving. Everyone has a choice, I've made mine and I believe keeping active will slow down the progress of my PN which is perhaps the best we can do. Wish you the best and my advise....keep moving.
Replies to "To Ray - In Feb 2020 Mayo in MN gave me the idiopathic axonal sensorimotor PN..."
To NJ Ed
I have bi-lateral drop foot due to axonal peripheral neuropathy. For several years I was using AFOs that fit inside my shoes. I even had custom made AFOs that did not work for me at all. I changed orthotic clinics and learned about TurboMed AFOs. These AFOs clip to the outside of your shoes and are a game changer! I wear shoes that actually fit my feet and have much better mobility. You might want to check them out at: Turbomedusa.com
I agree. PN has put me off balance but I’m still doing daily activity. I’m on gabapentin for years and if I don’t take it, I feel it. Night is the worst. I had hammer toe on my rt foot because I was gripping when I walked. The podiatrist released the tendons of the toes and it worked amazingly well! But I still have PN in my feet. I wear compression socks during the day and toeless compression ankle socks at night. Keeps me from being foot restless under the covers. Doing everything I can with limited relief.
Ed:
Like you, I was diagnosed in December 2023 at Mayo Clinic in Rochester after DOZENS of tests with "axonal, sensorimotor, large fiber predominant peripheral neuropathy, uncertain etiology." I was also told that there is really nothing that can be done for me. I am 69 years old and feel as though my quality of life has declined quite a bit. I can still walk and ride a bike but hiking now is difficult. I exercise every day - stretching, core exercises, weights, and riding either a stationary or outdoor bike. Fortunately I'm not in pain but my feet are always numb and my ankles and lower legs are very weak. I'm a fall risk. I too have drop foot and severe problems with balance. Five years ago I was running a half marathon every other week!!!! Those days are history. I just find it hard to believe that the MC couldn't help me. I feel my legs - my feet - my life slowly slipping away from me every day.
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You are right there is no cure yet, but
I just wanted to share with you, that I had some of the same pain symptoms. My diagnosis is severe axonal sensorimotor polyneuropathy. It took me six years to this treatment that actually works! If you would like to know more about the RST Sanexas treatment that I got I would gladly send you my story. Let me know. Wish you the best!