Axonal peripheral neuropathy: Finally, a diagnosis!

Check out my story here
https://connect.mayoclinic.org/comment/645606/

What is the cause of your neuropathy?
Have you had the biopsy for small fiber neuropathy?
Here are some labs ordered by Dr Oaklander.
https://www.google.com/search
Here is another one
https://www.google.com/search
It does move into your organs.
https://www.foundationforpn.org/
Mine is autoimmune severe axonal sensorimotor peripheral polyneuropathy
Small fiber neuropathy
Dysautonomia

@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.

@mjmarshall

Thx for this recommendation! The other AFOs I had were HORRIBLE - my feet killed me!

@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.

@mdrummy56 The IVIG treatments were not mentioned to me at all. So, never tried it but did read up on it a year or so ago. In a nutshell, if I recall, I think the main purpose was to help prevent further nerve damage. But does it regenerate and that was as far as I got into my research on the subject.

You have to find the cause Aka etiology. Mine is autoimmune. Lupus, Hashimotos Sjogrens mixed tissue disease.
Neuropathy
Cardiac Autonomic Neuropathy
Severe axonal sensorimotor peripheral polyneuropathy
Small fiber neuropathy
Dysautonomia neuropathy

@artemis1886 The etiology for my condition is "uncertain"......

Hello...Yesterday I had the nerve study done on my legs. results are 1. Bilateral lower extremity peripheral neuropathy that effects the sensory and motor NCS. It is demyelinating and axonal in nature.
2.. Bilateral L5 -S1 chronic lumbar nerve root irritation/ chronic radiculopathy with expected changes on the EMG study of the lumbar paraspinal region after previous posterior spinal surgeries (5 to be exact).

So, in laymen's terms.... all the nerves in both legs are damaged. Next step is to get me in to see a Neurologist, as this is not within the scope of my Orthopedic Surgeon. I am waiting on a call to set up an appointment.
So, I had to come home and mentally unpacked everything I was told. You can imagine all the things whirling around in my brain, while trying to not over think this. The key words I tuned in on at the doctor's office was, Serious, its urgent you get in to Neurologist immediately (knowing the word immediately these days mean anything from two weeks to 3 months.) Now I know why I can't turn over in bed without screaming at night, why I can't lift my legs, why I feel as if I have lost muscle tone in my legs, and why I can no longer do my 4 mile walk every day. Eight months ago, I was able to do all these things and never skip a beat...then BOOM I can't do any of those things now. The most encouraging word I hear yesterday was my Ortho doctor saying to me "This will not be forever". Those words were worth gold to my ears. I sleep in the guest room just so my husband won't hear me screaming out so bad during the night....and yet there he is trying do anything to give relief that just does not come. It's every single night for the past 8 months. I'm so tired, worn out, but I am not depressed. I just keep seeing Jesus suffering unmercifully on the cross and compared to that I know I can deal with this.
I know this could be as simple as a vitamin B12 deficiency. U know there is a MR Neurography that can be done to actually get a closer look at the nerves and in the nerves.
I have always been the type of person that everything has an explanation. Not always an answer, but an explanation, a depth that can be looked deeply into. I also believe that part of a diagnosis and treatment is attitude and asking all the right questions and forcing a sit-down eye to eye conversation between doctor and patient. Never walk out the door wishing you had asked this question or that question. Walk out knowing all your questions were addressed. My Primary doctor is thrilled that I advocate well for myself. But if I don't, then who will.
In closing I will say that I just happened on this site, and was surprised at the number of people who are dealing with the same thing I am. It's great to have groups like this, sharing stories and what worked for them and what didn't. Nothing like a chat room where empathy is found and appreciated.