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Axonal peripheral neuropathy: Finally, a diagnosis!
Neuropathy | Last Active: Nov 3, 2023 | Replies (115)Comment receiving replies
I have extreme pain and numbness and tingling in my extremities - mostly in my legs. Sections of my legs are foreign to me. I get no feedback from them and I have no idea where they are in space. Like as I lay here typing this I couldn't tell you if my feet are spread or not because I don't remember what position I put them in last. The pain ranges from crushing to burning sensation at an indescribable level. And this is coming from a guy who crashed a motorcycle breaking his femur into multiple pieces and twisting it onto the wrong side of his body. Grabbed the leg and put it back on the correct side. Spun around on the hill so feet were higher than heart. And dug into race leathers and found the cell phone to call for help. I know pain well. But I never knew this level of pain existed. It is relentless. It's is 24 hours a day. I can walk but no one knows how. I can ride my Superbike and they definitely can't explain that nor can I. I was told to keep riding as long as I can - with the additional statement of "I wouldn't normally tell someone to ride a motorcycle." I've attached an image of me from 1997 at the WERA Grand National Finals to explain why that was recommended.
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When I close my eyes, I lose all sense of balance. I need 3 point contact when washing my face at the sink or sudsing my hair in the shower. I can't look up at the stars without leaning against a stabile fence, post or companion. I don't know if I've lost a sock or shoe until I visually see it's not on my foot. I don't believe I can ever work in my darkroom again. Recently, while roaming the internet for information on Anti MAG Antibodies, I found there's a name for this lack of sensation. Sensory Ataxia. It is one of the symptoms of this disease. My neurologists never put or gave me the name for what I am experiencing. The first neurologist explained that if the book of neurology were a foot thick, what is currently known is about maybe 1/2" thick. I can't get a straight answer from them about how this disease will progress, so I can prepare for end of life issues. I guess they're trying to give me hope but, I still want to know.
I've read about the excruciating pain that comes with neuropathy but, I was told this is not part of my disease; one thing in my favor that I can be grateful for. However, I came across an article about neuropathy pain, specifically diabetic neuropathy. It may help other types of neuropathy but, it needs more study. Check this out:
https://medicalxpress.com/news/2023-02-spinal-cord-diabetic-neuropathy.html
I love that your doctor's are allowing you to keep riding your beautiful bike. The disability license plate is a hoot. Stay safe and good luck.