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Axonal peripheral neuropathy: Finally, a diagnosis!

Neuropathy | Last Active: Nov 3, 2023 | Replies (115)

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@thecatnthehat

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.

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Replies to "Reading all these posts - almost all of it is familiar to me. I have Severe..."

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