Axonal peripheral neuropathy: Finally, a diagnosis!

Thank you for listening ! I know many sufferers from Neuropathy who would prefer to be dead rather than go on suffering when they have a need for reassurance that someone is doing something to help them get the relief they need so badly. Business can be good but Caring is absolutely essential and needs to be reassuring us that someone cares about PEOPLE as well as the mighty dollar. Please help us get some reassurance that help is on the way.
LenM

How do not spend any more money on quackery?

What works for myopathy??

How do you know the type of neuropathy you have?

Visited a Neurologist who tapped a few spots on the legs and said it was Peripheral Neuropathy,
Gave us a script for a few tablets which did nothing, Said that will be $500 thanks. Come back in 3 months.

Now THAT'S quackery, if this neurologist did nothing more. If neuropathy was suspected, you could expect at a minimum to have a test such as an EMG, properly administered. And you should expect a diagnosis along with a print-out of the findings before you leave the office. You may well not understand much of that information but it gives you a basis from which to form questions to ask when you have your follow-up appointment. I am so sorry that you seem to have been dismissed as just another source of income for this person. Please consider a second opinion, and a third if doubts persist.

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.

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

@boho44 It stuns me when I read your comments. I can relate to everything you are saying and I'm experiencing the same with axonal sensory motor PN. I am not aware of anyone in my family with PN. I was told that genetic testing not warranted without having several people in same family with symptoms. The shopping cart at the stores allow me to be more stable and I've gone to the food store, walked around and checked out with 3 items in the cart, The main purpose was to get the walk in especially during winter months. Stay safe. Ed

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.