Axonal peripheral neuropathy: Finally, a diagnosis!

Duquer - very interesting. How do you want to send to me? Ed

Let me know what you think

Ralph

What caused it? Mine was cause by type 2 diabetes. Causing me a lot of pain and none of the poison pills work. Good luck!!

OK, thanks Ralph, will let you know --
Ed

Reading all these posts - almost all of it is familiar to me. I have Severe Axonal Neuropathy. My pain level is extreme. Mostly 9-10 but 5-6 with Norco and Pregabalin. I hate them both. But I also can't just lay here in level 9-10 pain so it's sort of a catch 22. Not all days are bad.. sometimes I feel what I consider to be fairly good and I can suit up in my leathers and go ride my motorcycle. That's the passion of my life and I am struggling to hang onto it. It very difficult to ride a motorcycle when you can't feel your feet. I know you guys will understand that. When I stop at redlights and put a foot down I can't really tell that it's on the ground until I push down hard enough to change the way the bike is sitting and then I sort of use that to figure out how much to push down to balance. Pretty much the same way I walk. Everything is off visual queues like playing a video game where there's no physical feedback. Anyway it helps to read that I'm not alone. I feel very alone. This level of suffering shouldn't be a thing. Like there's no treatment other than trying to reduce the pain and that's just unbelievable to me. I'm supposed to have RFA (nerve branch block) surgeries on different sections of my spine multiple times a year but I can't afford that so it looks like my life is going to be laying in bed in agony and taking pills and occasionally overcoming it and maybe riding my bike. Really sucks.

Hello @thecatnthehat, Welcome to Connect. I know it's a difficult road that you are on with axonal peripheral neuropathy. You mentioned you were supposed to have nerve branch block surgeries on different sections of your spine but can't afford them. @duquer posted about a treatment that gave him a much better quality of life in another discussion here that you might find helpful - https://connect.mayoclinic.org/comment/645606/.

You might also find the following discussion helpful where other members have shared their story and what has helped them:
--- Member Neuropathy Journey Stories: What's Yours?:
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

Have you done any research into other complementary or alternative treatments that may reduce the pain?

The Cat, Like you I also enjoyed riding my 2008 Harley Heritage but after an episode of vertigo going up a large bridge I hung up my leathers and sold my Harley. I’ve ridden all over the country including Germany for the 3 years I was stationed there in the Army. This city I live in is the worst State for motorcyclist ! You fall here and you become a human speed bump. I wish you the best but personally, if I didn’t know where my foot was I definitely would reconsider. Best of luck….David

I've read so much stuff on the internet I can't remember what I read and what I haven't. My pain started in October 2019 and I just figured it would go away at some point. It became severe by summer of 2020 and I had to take an ambulance ride to a hospital where the Doctor ran a bunch of tests and told me I had some form of Peripheral Neuropathy and referred me to a specialist. The day before I was to see the specialist I got laid off (I was a Principal Engineer at Western Digital)... so that took my insurance away. And again I had no idea how serious the condition was so I just kept on trying to exercise and ride my motorcycle and thought it would heal at some point. I used to race Superbikes when I was in my 20's so riding is essential to my happiness. So that's primarily what I've done for exercise but it was becoming increasingly difficult. My speech is also affected and I sound like an idiot when I try to speak a lot of the time. Circling back, the pains were not constant and I was getting by ok through 2021 and then in spring of 2022 it started getting worse and worse. My balance was way off and walking became incredibly difficult. I had ordered a new bike to try to return to the racetrack and the night that it showed up I realized I couldn't feel my feet when I was trying to get it into the garage. I managed to get to the bed and figured I'd be ok and get up and ride it in the morning. When morning came I couldn't feel my legs and when I tried to get out of bed to walk to the bathroom it was like I was a newborn calf. I couldn't walk at all. I dragged myself to the bathroom with my arms and then went to the hospital. They ran everything they could think of and admitted me. Within a couple of days I found out this was serious and maybe permanent. One of the Doctors started telling me how other people lived in a wheelchair just fine and I was just freaking out and ejected him from my hospital room. After I got out of there I was indeed in a wheelchair numb from the chest down and at home with no solid answers. Didn't take but a few weeks before I was overcome by the pain and had to call an ambulance. When the ambulance arrived my vitals were so high they were afraid I was going to have a stroke so we went rather quickly to a different hospital. They had access to all the records from the previous stay and went and got a Neurosurgeon. This was the beginning of actually getting some help. This guy told me my MRI showed some sections of degenerative disc disease and that he could do surgery and address that, but that I wasn't complaining of the pain usually associated with that so before he did that it was more important to get to Neurology and figure out what was going on, as well as pain and spine department to try to manage the pain level. Long story longer, when the Neurologist did that thing where they electrocute you and measure the time and amplitude, as well as inserting the needles into my leg muscles and checking for muscle loss. His notes are filled with lovely phrases like "severe nature of his findings" and his assessment of Severe Axonal Neuropathy and Peripheral Neuropathy at least gave me a name for what I've been going through, Since then it's been tons of oral meds and epidural pain injections. I just had 6 epidural corticosteroids Feb 16th. That's after doing the same thing December 27th. I was actually supposed to get the Feb injections in January but my insurance didn't approve it by the scheduled date so I got bumped and the next appointment was Feb 16th. Anyway this is like the 4th time for that procedure since October 2022. I setup a gofundme which I'm not proud of but I don't think I fit the demographic for that to gain traction so what's probably about to happen is they're going to ask me for the pre-payment which they always do and when I tell them I can't pay it they're going to cancel the appointment. The corticosteroids are right in the window where they're supposed to reach their maximum effectiveness and so I'm going through that roller coaster of psychological and physical distress. As I type all this I'm off and on crying it hurts so much and the situation is beyond overwhelming.

Oh and as to the wheelchair - the nerve meds helped a ton and I just refused to accept that so I kept trying to walk from my bed to the bathroom until I finally made it. Then to the kitchen. Then to the elevator. Etc. One victory at a time until I could walk about 100 feet before I had to rest. I just kept at it until I made it to my motorcycle and then I knew I was going to ride again at some point. It took forever to be able to actually put my gear on (I don't ride without full racing gear) but eventually I did it. And after that I would try to put it on and stand up which took a bunch of tries. Eventually that worked and I started working on walking with the gear on and once I could get to the bike - I rode. I actually rode at a test day at Roebling Road Raceway but not very well They understood my situation and kept an eye on me. I think I managed like 7-8 laps. So everyone I know thinks that's a miracle already but I'm not happy with where I am. I mean, I'm glad I can walk a little and ride a little but that's not good enough and the pain is off the charts. Anyway - sorry for venting all over the post.

Cat, It sounds like you’ve been through the wringer. When I first came on this site a few days ago I knew from the beginning this was a great site. They’re structured extremely well and no drama which is unusual like other sites. The hardest thing following a diagnosis is setting our egos and pride to the side and learning to accept our situations. It took me a year. During the first year I became a beer can collector and became so depressed that I actually thought of doing the worst. If it wasn’t for my wife I would have. Having the support of your family and true friends you’ll get through this. Hang in there my friend, better days are ahead of you!……David