Axonal peripheral neuropathy: Finally, a diagnosis!

Thanks for your comments. What is the RST Sanexas Treatment? I have Large Fiber atonal sensorimotor PN.

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.

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

@njed

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.

@mdrummy56 It was not easy to get into Mayo and like you, I was told there is nothing that can be done. I was disappointed; however, I was glad that what I have is not something worse. You are able to do many things like walking, riding a bike, doing core exercises. Our symptoms are very similar however, the cause may not be the same which I feel makes PN extremely confusing and difficult. I'm in my mid 70's and was active until my mid 60's. I often remind myself to look at what I can do, not what I can't do. Yes, balance is a problem, and I now use a cane more often than not. We must make adjustments in life and figure out how to do what we want but in a different way. Think about all the things you can do and keep doing those things that can also slow down progression of PN. The best to you and keep moving. Ed

@njed I agree with everything you say Ed - 1000%. I had a very good friend who was diagnosed with ALS in his early 70s and lived for another dozen years. He had been a marathon runner and golfer and didn't drink and was in great shape. His decline was gradual but the last five years were truly horrible. I consider myself fortunate that all I have is PN. Have you ever tried IVIG treatments? Mayo recommended them last year but I am just now getting around to them here where I live.