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Axonal peripheral neuropathy: Finally, a diagnosis!

Neuropathy | Last Active: 6 days ago | Replies (149)

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@boho44

Ray:

I have axonal peripheral neuropathy.

About 15 years ago I noticed a slight weakening and tightening in my thigh muscles. Each time I saw a doctor, I mentioned it. One prescribed therapy, another recommended Tylanol. Most just shrugged and didn't say anything. It gradually got worse over the years, so that I had more and more trouble walking and keeping my balance. But no doctor could tell me what was wrong with me. Finally, my last doctor listened to me, watched me walk, and referred me to a neurologist. The neurologist did a number of tests and reviewed my medical records extensively. His conclusion was axonal peripheral neuropathy. The cause was "genetic."
Finally, a diagnosis! It then made sense. My mother had the same problem for years. She never saw a neurologist or got a diagnosis. We all attributed her walking problems to her arthritis.
But now I'm sure she had axonal PN, and I inherited it from her.
My doctor referred me to a physical therapist who specializes in leg weakness and balance issues. After about six weeks with the therapist, she gave me a work-out regimen which I now follow. I think the exercises have slowed down the PN but of course have not eliminated it. I can walk around our house okay, as I have plenty of chairs, tables, counters, and walls to steady myself. But, outside I use a cane for short walks (parking lot to store) or a walker for longer walks. I do most of our (my wife's and my) food shopping. Walking around the store with a shopping cart is easier (more stable) than a walker.
I imagine some day I will need to use a walker even in our house, and eventually, like my mother, I will not be able to walk at all. But, I continue to do my exercises and hope to put that off as long as possible.

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Replies to "Ray: I have axonal peripheral neuropathy. About 15 years ago I noticed a slight weakening and..."

I have been diagnosed with neuropathy…I also have balance issues along with weakness etc. I walk everyday trying to ward it off…but am slowly losing the battle . I was diagnosed nearly 8 yrs ago and am 62.
How old are you if you don’t mind me asking?
Steve

What is the cause of the neuropathy?


Dr Ann Oaklander is a research neurologist out of Boston. I went to see her for answers. She has a lot of lectures online. She has been researching neuropathy since before2015 and her daughter is a research neurologist. Neuropathy is just the beginning what is causing the damage to the nerves. That question drove me crazy. Mine was autoimmune neuropathy.

Have you had the biopsy to see if you have small fiber neuropathy?
Dr Oaklander helped a lot. I had all ready had the emg/nerve conduction testing and the biopsy for small fiber neuropathy. I had listened to all her videos and wrote down my questions for when I saw her. I was on IVIG from age 10-18 every week. My immune system was very low. She also has a list of labs to be done. I will send them to you if you want them. I had to have them done before she would see me.