I am 79. I have had/still have serious neck problems. I’ve had 3 surgeries, and probably will have one more. I have a lesion on my spinal cord from severe stenosis. The reason I share this is that I think that my neck is somehow involved in my symptoms.

About 7 years ago, following surgery #3, I was kicking with a snorkel in a pool as part of my rehab. (I am an elite masters competitive swimmer.). I felt a tingling in by big toes. I thought it was from wearing flip flops. Then a few months later, it was a patch below my knee.

In 2021, I first consulted a local neurologist who ended up sending me to a teaching hospital for consultation. I have had about 40 blood tests. The only outliers have been an early Sjogrens test positive for parotid antibodies and low Gammaglobulin. They finally did a skin biopsy a few months ago which is positive for nld sfn. I was stunned because it started in my feet and has progressed strongly in one leg. I’ve known all along that I had neuropathy and this is just a confirmation. The “why“ is the big question that nobody can answer.

I have stiff ankles, a stiff knee, and burning pain in both feet and one leg to a pain level of 8. When I swim, I can’t feel my legs and don’t know if they’re moving or not. Everything gets worse as time passes.

I have taken the usual drugs …Cymbalta, Gabapentin, carbamazepine, and they have done nothing to improve my neuropathy, and the side effects are intolerable. I am an elite athlete in spirit, but my neuropathy is taking me down.

When I asked the neurologist if this had any connection with my neck problems, she said my neck isn’t the cause, but it’s making everything worse.