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Lost my legs and now both arms to Neuropathy.
Neuropathy | Last Active: Sep 11, 2022 | Replies (13)Comment receiving replies
I’m so sorry that you are going through this.
My husband has polyneuropathy. It started years ago both hands carpel tunnel. Then one arm ulnar nerve reposition. Also had back pain from an accident 30 years prior and a failed surgery. Three years ago he was barely able to work due to pain in feet, back and legs.
After two years of tests, including spit DNA test, finally a lumbar puncture ruled out MS so they said polyneuropathy. Several trips to different neurologist. His work finally told him he had to go on Ltd because they didn’t want to be liable if he fell.
First he used a cane, then a rollator, now he can sit on the couch with one knee up and that’s the only way he can stand to sit. He can’t walk without support at all. His stomach doesn’t digest food properly. Constant stabbing pain all over his body, along with inability to feel his feet. Like walking on blocks of wood. He was put on gabapentin a few months ago and it helps him at night. But there is only a prognosis of progression of his polyneuropathy and no hope for improvement. He has been home for a year and a half and has so much trouble leaving the house that he seldom does. He is beyond exercise or physiotherapy. That was attempted years ago.
He too has lost the myelin coverage on his nerves.
He hasn’t been in a store in over a year. He can barely make it to a dr appointment.
He is only 54 now.
Wishing you some relief from this awful condition.
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Sorry to hear of your husband’s condition. It sounds almost exactly like mine. They discovered I had what’s called MGUS, a blood condition that is progressing into a cancer, Multiple Myeloma or Non Hodgkin’s Lymphoma. From my research, the Myelin can slowly recover in certain cases. The damage to my nerves is not one of them. When I went to physical therapy they wanted me to use a walker (a 4 wheeled device) but I learned a very important lesson, your balance front to back is a narrow margin and falling backwards is very dangerous for both me and your husband. So I learned how to use two canes to stand and walk without falling over. Standing upright and not moving is extremely dangerous to do because your balance front to back is such a narrow line.
Now that I’m losing the usefulness of both arms and hands besides my both legs and feet, a power wheelchair is in my future. I know the depression your husband is feeling, it becomes overwhelming but you can’t just sit there saying “why me?” He has to take one step at a time instead of pitying himself because of his misfortune in life. I was just 6 months old when doctors told my mother to take me home because I was dying and nothing could be done to save me. My mother never gave up trying to save me and neither have I, I’ll turn 80 next year. I never gave up and my body is still fighting, a rare heart defect, bad kidneys, mini stroke, 4 blood clots that tried to kill me, 3 heart attacks, bad guys turning into cancer, a nonexistent immune system, 5 cases of Covid, neuropathy in both arms and legs, 19 lung infections in 8 years, an abdominal aortic aneurysm and the list is still being added to.
I know just how your husband feels and he needs your emotional help, whether professional mental help or simply sitting by him and hold his hand and tell him and show him how much you’re still in love with him, no matters what condition his body is in. If you don’t you’re going to lose him before you realize it. I hope your husband sees how empty his life is becoming and fights to live. @becky1024