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Living With Large-Fiber Neuropathy
Neuropathy | Last Active: 2 days ago | Replies (54)Comment receiving replies
I just saw this today, Ray. I have large fiber, axonal polyneuropathy in my feet to my knees, and in the outer edges of my hands since a perfect storm of autoimmune reactions that hit me in 2021. From my reading here, I'm not sure length of fiber involvement makes a difference in terms of mobility. It's the extent and severity of the nerve damage that seems to count more.
I have benefited greatly from continuous physical therapy since 2022, when the pain stopped. This includes Aquatherapy and some swimming. I live as much as possible in the day, use a rolling walker now for short distances and a power wheelchair, and an accessible van which my husband drives, for longer distances.
I've joined a world I didn't want to enter, but I still want to stay in the world and am glad for this community!
By the way, I'm 84, and glad to have my family, friends, and other parts of me in good shape.
Replies to "I just saw this today, Ray. I have large fiber, axonal polyneuropathy in my feet to..."
In 2021, did your neuropathy start after your covid shots? After my 2nd Phizer shot, I got PN.
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Hello, efgh1020 (@efgh1020)
I’m also unsure if fiber length alone determines a person’s set of symptoms. My doctors never mentioned fiber length. Only after considerable reading did I learn that fiber length may – may, not must – determine symptoms. As I was blessed with no pain – not even a smidgeon – and my reading had been suggesting no pain “more often” suggests large fiber, I flat out asked my one neurologist (as he’d just concluded my second EMG) if mine was large fiber. As I recall, his reply was “Oh, most certainly.” That’s why I’ve been calling mine large fiber.
However, it wouldn’t surprise me if I learned there’s a good deal of crossover: large and small fiber.
I’m still getting around pretty well. I’ll carry a cane if I’m heading outdoors or going about in unfamiliar indoor spaces. Here at home, I do pretty well without my cane. Luckily, my neuropathy has not spread; frankly, if my two EMGs hadn’t told me I had sensation loss in my feet, I’d probably not even known it. I say I do pretty well with or without my cane; nonetheless, walking – indoors or outdoors, familiar or unfamiliar environments – calls for a little extra caution.
I wish you well! This can be mind-boggling, this neuropathy business. 🙂
Cheers!
Ray (@ray666)