Axonal peripheral neuropathy: Finally, a diagnosis!

I’m taking physical therapy, line dance, walk carefully in the hills. And move like a clutz. I take alpha lipoic acid and b12 among other things. I’m also doing deep tissue massage and acupuncture. Chiropractor didn’t help. Red light therapy didn’t help. Leeches didn’t help. Staying warm is essential or my hands, legs and feet cramp badly.

I was diagnosed with axonal peripheral neuropathy in February 2017. The peripheral bit means I have no feeling in my feet and lower legs. 6 months ago I could walk 2 kilometres, now I struggle with 1 kilometre (600 metres). The axonal bit means the axons on my nerves are degenerating which means all my bodily functions are deteriorating. There is no treatment and no cure so I just exercise as much as I can and enjoy everyday.

And they're progressing and I have looked into searching of possible diagnosis I have a hard time getting my doctors to help but I think I just will go on doing what I'm doing and exercising as much as I can and I have been some physical therapy and I think that might help but I think your idea I think it's a good idea to just go on and enjoy life thank you

@vlp - yes, you are right. Exercising is important. I am back in PT for balance therapy, and it has helped a little. I go to PT 2 times a week when home in NJ. I also walk 4 times a week. The ability to walk any distance has decreased thru the past 7 years but I continue to do what I can. This damn disease is progressive and getting a confirmed cause is likely out the window. So, we are left on how we deal with it. Two days ago, I walked further than I did a week ago. Today, I hope my walk will be better than two days ago. Keep moving and as @geoffv mentioned, enjoy every day. I think that is the key! Be well.

I do not believe there is much that can be done. I’ll probably take some flak for this comment. But every Dr whether traditional western medicine, naturopathic, chiropractic, etc have all said the same. No cure, very little treatments, clearly not understood by the medical profession. Doesn’t mean you (anyone) shouldn’t try things but for me, I don’t waste my time anymore.

I got part of what you said. But it also seems like you're giving up. I have down that I I take it moment by moment and adjust to what how I feel then and do as much as I can myself. Whether it's walking to the mailroom in my apartment complex or walking my dog to the area whatever I can do maybe it's just walking to the kitchen sin

VLP,
Thanks, and there is value in your comment, we’ll made point. I guess I should’ve closed with, all I do is try to keep moving, stay as active as possible, & look for any new info of a breakthrough nature. Staying positive is important, along with being realistic.

My neuropathy is progressive so I am numb for my waist down pretty much, and of course I was informed as well there was no cure, which is mentally devastating. However I have tried to continue staying prayerful first because that’s the only thing that keeps me sane. I unfortunately can’t walk a mile or anything far without the assistance of a walker or a cane. I am trying to get physical therapy at home because I suffer with other disabilities so I am 90 percent homebound so the paramedics come to my home every week. On the bright side I am still trying to live life to the fullest that is permitted and I have a wonderful Daughter that takes care of me. Thank you everyone for your support and responses I will take all of your information under advisement.

I couldn't have said it better it's not easy is it. I'm supposed to add the text but I'm new at this I don't know how to work my phone very well sorry hey I got a lot out of these discussions thank you bye-bye

Have you heard about this new Sanexas treatment for the neuropathy pain? It work well for me