Neuropathy in feet and limited toe movement?

@mjpm2406 @jesfactsmon Hi concur with Hank, that I have never heard of all the tests for Neuropathy that you have described, and I am so sorry also, for your rare blood cancer. All of us here know how bad Neuropathy can make a person feel. Please do get back to use once you learn more. I hope you have something to help manage your neuropathy. I know there is not much that works. My best to you, Lori Renee

The neuropathy panel is performed by Invitae. Go to Invitae.com to look at the various panels. My neurologist ordered the panel based on my family history and her exam. It's a zimpkd saliva test. She suspected SMA so she added that to the panel along with MS, ALS, and Parkinson's just to "rule them out". My insurance carrier covered the cost of the neuropathy panel. I now have an appointment with my Neurologist on Monday to go over the results and talk about a treatment plan. My neurologist wants to chat with my oncologist first because he wants to coordinate a treatment plan with the Leukemia Group at Sloan because he doesn't know anything about MDS/MPN-RS-T.

You might want to try YogaToes. I use mine every night, just for a half an hour or so.
https://www.amazon.com/Original-YogaToes-Sapphire-Stretcher-Separator/dp/B002SPV068/ref=mp_s_a_1_2_sspa?dchild=1&keywords=yoga+toes+gems+gel+toe+stretcher+%26+separator&qid=1597427424&sprefix=yoga+toes&sr=8-2-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEyVEI5UldETjZUS1JXJmVuY3J5cHRlZElkPUEwMTE1NzYwMVk3UjdHS1BBTEpUUCZlbmNyeXB0ZWRBZElkPUE0WTZLVTlMMU9FREMmd2lkZ2V0TmFtZT1zcF9waG9uZV9zZWFyY2hfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==

@stefspad Now that you show me those I remember getting a pair for my wife a few years ago. I will have to ask her what she did with them as I have not seen her use them in a long time. I know she used to say she liked what they did for her, not sure why she quit using them. Thanks! Hank

@jesfactsmon I hope you can find them. I’ve turned lots of people onto them, even people who don’t have neuropathy.

I have toes which are crooked, also. I went to a specialist for this. I was going to get them straightened. I understand the pain you have after the surgery may be worse than the pain you may have now. Who cares if you can or can't bend your toes, John? Do they hurt? I am too old for elective surgery myself. I decided it's not worth it. I do have neuropathy--pain radiating from spinal stenosis. It goes clear down to my feet. I pray I don't have to have back surgery. I take pain pills for my back. I know my foot pain would be much worse if I didn't take them.

My mother was OCD. She also suffered from anxiety. Our house was spotless at all times. She cleaned seven days a week. She had certain days for washing, ironing. She was a wonderful cook. She also baked pies, homemade all the way. She picked apples, peeled and sliced them, made delicious apple pies. Oh, yes, I'd like to have one right now! I turned into my mother. I kept our house immaculate at all times. I made homemade food. We had three meals a day. I changed five beds every Friday. I sometimes held a job and still kept this up. When my son was about eight years old, he said: "CLEAN, CLEAN, CLEAN, THAT'S ALL YOU DO! God bless him. I love him dearly. I don't know what prompted it .I had four children plus a stillborn boy. My husband's twin brother and son moved in and stayed for three years. I did their clothes and fed them at the same time. That made my four kids, my husband, his brother and child and me. That's eight people for every meal. I cooked large meals, did everyone's laundry and ironed everyone's clothes. Yes, I did it all and I still cleaned like crazy. I never went anywhere on weekends. I cleaned. My husband and his brother went golfing every weekend. I did not love my life, that's for sure. Yes, now I need back surgery for spinal stenosis, have pain even going to my feet. I attribute it to all the lifting of the furniture I did each time I cleaned. Yes, I moved everything!

@woogie, Although I don't have any pain with my hammer toes I do worry some about them getting worse and affect walking/balance some. My sister-in-law had a couple of her toes "fixed" by straightening them and said it helped her. I don't think she had any pain involved but she also does not have neuropathy.

@woogie I had toes on both my feet straightened
I went home the same day. They were pinned the pain was minimum. After two weeks I had to go back and the pins removed. First time that hurt. Second time the method may have been slightly different because the pins started moving out and it was painless. One danger besides pain of not having it done is that the toe curling down the nail can become ingrown. In one toe a corn had formed from rubbing downward and an ingrown nail had grown into the corn. That was extremely painful and the surgery was a great relief. Supreme Court Justice Ginsburg is inspiring. Never too old. If one doubts a doctor's recommendation a second opinion should relieve doubts.

I went to Weill Cornell in Manhattan with my two daughters for genetic testing because of our family history of PN. My daughters wanted to know if they also have the same gene mutations as I do. We were given EMGs and needle EMGs. My results indicated severe neuropathy. My daughters tested normal (so happy). They also ran exome sequencing and whole exome tests. These tests look at 20,000 genes in your body and test for the proteins generated by those genes. Results should be back in mid-January. No final diagnosis from Cornell because they want to see the results of the exome tests.