Living With Large-Fiber Neuropathy

Thank you! This info is very helpful! And I am going to look at the Atmos again after reading your description. Actually the wide toes with narrow heels is a more common shape than you might expect. For years, New Balance offered shoes made on the SL-2 last which is exactly this shape, but then they stopped making most of them, and in the walking shoes, changed it to wide heels. Sigh. I'll let you know how the Ultrafly5 fits. Thanks again.

I had forgotten about the SL-2 last! Many years ago, it was my go-to for walking. But as the neuropathy has intensified, I need wider to even make it a couple of miles. Even so, I’m pulling off my shoes as I walk in the door and slipping into crocs.

New Balance: A shoe last is a foot-shaped plastic or wooden mold around which a shoe is built. It provides a shoe's internal shape.
Shoes built on our SL-2 last have a deeper, wider toe box, a higher instep height, and a heel that is slightly more narrow than that of a standard shoe.

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.

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)

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.

Hi, suetex (@suetex)

I have never had a small fiber biopsy. I'm guessing that because when I first met with a neurologist and told him of my symptoms (some unsteadiness on standing, some instability while walking, but absolutely no pain), he suspected large fiber right off and never even considered asking me to get a small fiber biopsy.

My two EMGs (a year apart) both involved my legs and feet, chiefly my feet.

Ray (@ray666(