OMG I'm tearing up reading your discussion with @afirefly. I thought I'm the only person dealing with this progressive nueropathy through Mayo. I can identify with most of your stated conditions, the fears of a loss of independence, what health complications are ahead of me and the lack of an effective therapy. My neuropathy is also idiopathic - no known cause. It's many years into the progression. It started about a decade ago with numb/tingly toes and then feet a few years later. Now, my toes curl under as I walk, tripping me up; so I have to wear good fitting shoes. One year ago, I underwent Lumbar Decompression Surgery, L3 to L5, both left and right, in an attempt to get back some nerve/muscle control of my left foot. Several months post surgery, I noticed both feet and legs were equally worse. It does appear that I healed and recovered remarkably well from the surgery. I don't notice any restoration in leg or feet feeling yet, but hopefully in the second year I may. I used various strategies to maintain my fiercely guarded independence, especially during Covid-19. Unfortunately, the progressive nature of neuropathy is making every aspect of life more challenging. Like you, I don't experience pain, except from the muscle cramps, which nothing seems to help. Thankfully, I go through weeks of relative less cramps to weeks of intense ones. I keep getting weaker and find it more difficult to exercise. Now that my neuropathic nerve/muscle degradation involves not just my feet, ankles and legs, but my abs, chest and arms; I'm experiencing heart and other, seemingly unassociated complications.
Question: Are there other conditions/diseases that can cause these kinds of symptoms and is there really any effective interventions or therapies?
Hello @campberj, Welcome to Mayo Clinic Connect. I'm sorry to hear that you also have similar symptoms but I can relate to your feeling of finding out that you are not alone in the way you feel and your symptoms. You ask a very good question and one we have all searched looking for an answer in hopes that we can find that one fix that gives us back some of our previous abilities and life.
I know that daily exercise helps me mentally and physically by keeping the blood flowing. You mentioned curled toes. I also have "hammer toes" and my neurologist actually told me that's common with people who have peripheral neuropathy. I think if it's severe enough there is surgery that fixes the condition. I've just never felt mine is that bad. There are a couple of discussions you might find helpful.
- Hammer toes: https://connect.mayoclinic.org/discussion/hammer-toes/
- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
You also mentioned muscle cramps in your legs. Have you found anything that gives you relief when the cramps appear?