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@da20pilot

Hi Jim
Great insight. My feet and hands r numb. Yet they burn like well standing barefoot on ice. When on opioids my hands or fair but are bad without. I fall mostly on the steps and in the shower. I assume its from looking up to down or vise versa as that is a test I had to do during my medical to get and keep my pilot's license. I loose my balance even standing still thu. I've broken ribs and toes falling. I've held onto the railing so hard it has flung me into the wall face first. I feel for your wife as I didn't get out of my adjustable bed for years and wouldn't have until my wife kicked me out. Get this I was diagnosed with a disease called polycythemia vera and put on a pill called hydroxyurea a chemo pill after I had a DVT blood clot. After 2 years this hit me like a brick the neuropathy I mean. Turns out I never needed it as I had secondary polycythemia and it resolved it self after I stopped working. Where I work had mold that caused severe copd so when I left a few year later the incurable polycythemia was gone. My hematologist diagnosed me when I went to see him and described my conditions. Burning numbness and pain in my legs. Trouble with balance and what I told him is all the sudden I became stupid. I couldn't concentrate. My pcp treated my for years then moved on to a hospital and sent me to a pain doc. After about 7 minutes over 3 appointments and a nerve test he told me I wasn't sick. Cut my opioids in half to take me off of them. I was in sever pain but thought it was from being inactive for years. Now that I've been on my own and up and around for months I realize it wasn't from being inactive it's what I was feeling before but worse. The new pain doc tells me the same bs so I started to cut my dose before he stopped them. Now I can barely walk. The burning has moved to my chest as well. I am lost and can't believe this is happening. Now that I've seen 2 pain doctors I worry no one will treat me.
I really appreciate your story and thoughts
Thank you.

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Replies to "Hi Jim Great insight. My feet and hands r numb. Yet they burn like well standing..."

Do you still fly? After I had a couple of strokes, I couldn’t get my pilots license. I was told that I could get a sports license which means that I can’t take anyone up with me. Now that I am paralyzed, I can’t use foot controls so I cannot fly anyway. My husband is a pilot, but he sold his twin engine plane so we are both grounded now.

About falling, I have no sense of balance, but if I look at my feet in the shower, then I have a better chance of knowing where they are. I fall a lot too, but I try to stay in my wheelchair except in the shower. We gutted our bathroom and had a walk in shower put in so that way, I can get my wheelchair up to a large stone bench and that has made it safer for me. I used to have one of those portable plastic benches, but when I would fall, the bench would fall with me and I would be stuck on the floor until my husband could rescue me.