Axonal loss polyneuropathy
 

Was Dx'ed with this last week after various suggestions that it might be CIS/benign MS. Two MRIs 6 years apart clearly showed it is not MS. EMG (what a lovely test that is--NOT!) showed serious axonal loss to the feet and ankles and starting in the calf muscles. Idiopathic since there isn't any booze, drug, chemo, or diabetes action.

As near as I can figure out, this started about 14 years ago. During all that time the feet have become more and more numb and gobs of muscle fasiculations, mostly legs, but all over the body. Dr. says no chance of ALS thankfully.

When I was being tested with the needles stuck into the muscles, my neurologist read the results of the right calf and immediately said, "Hmm. We have very new damage here." I have never heard of this sort of thing. Balance is terrible and I have taken to using a walking stick for balance. But, what is coming? Is this going to continue to burn out axons up through my legs?

Thanks for any insight/help!

Hi YaledMot

Welcome to Neurotalk. There's lots of useful info on the site regarding neuropathy and it's various form and causes.

As you've already found out it can be a complex issue with more than 100 different types and just as many causes. As regards prognosis - everyone's different depending on cause and type - not what you want to hear I realize. Idiopathic is a label that makes it harder to figure out what's happening - trying to figure out a definite cause is the best way to optimize treatment (different causes and types are treated differently)

If you have the energy you may want to search the site for 'axonal neuropathy' to narrow down topics (I've found that the word polyneuropathy is quite a generic term in the medical sense). Also you may want to try browsing some of the older threads for info about how others manage. Here's a link to get you started:

http://www.neurotalk.org/peripheral-...y-improve.html

This is also a good site for general neuropathy information:

Peripheral Neuropathy Fact Sheet

Please ask if there's anything else specific we can help with - I have several different websites bookmarked that I'd be happy to share.