Lost my legs and now both arms to Neuropathy.
I know not many, if any of you have the same type of Neuropathy that is killing my pain nerves. Back in 2018, I was walking to my daughter’s house when I suddenly stopped dead in my tracks. I didn’t know what happened but I literally could not move my legs, like they were paralyzed. I was just standing there like a statue and that’s when my neuropathy troubles began. I contacted my pcp, set up an appointment and he set me up for a referral to a neurologist, actually two of them. After my first visit and explaining what had happened, she had me see a specialist neurologist. He would eventually set me up for an electrical test to check the nerves in my legs and arms. It’s to check to see if the nerve is actually working by passing an electrical current thru different nerves. It’s to make sure there was no damage stopping the signal from causing the toes and fingers to move. (If you’re old enough, you did the same thing with a frog’s leg in biology class.). Anyway, I failed the test and the doctor was stumped, he said the one nerve in my leg was dead and he didn’t know what caused it.
Zip forward to 2019, by now nerves in both legs are dead, so my brain no long can feel what I’m walking on. I have lost my ability to balance myself and my nightmare continues. The pain nerve from mid thigh to the tip of my toes are dead. This in turn doesn’t allow me to feel if I cut my feet or legs till I or someone else sees me leaving a trail of blood, either on me or whatever I’m standing on. Thanks to my bad guys eating the Myelin coating off the nerves for food, that’s what killed the nerves in both legs. My testing neurologist warned me that whatever killed the nerves in my legs would most likely do the same thing to my arms and hands.
Now zip forward to 2022, guess what’s happening to my arms and hands. Yep, you guessed it, the nerves in both arms and hands are dying, especially the right one. My right hand is almost useless for holding anything and over the last few days, I can’t even pick up a pot or cup. Everything is going numb but the one nerve still feels some pain and OMG does it hurt so much I cry out. There are two nerves that makes your fingers and thumb work. The one that’s dead operates the pain sense is the thump, index finger and get this, the left side of your middle finger. The other nerve I can sense pain with is in the ring finger side of the middle finger, also the ring finger and the pinky finger. Having the neuropathy like I have is very dangerous. On more than one occasion, I’ve accidentally stirred boiling soup or water with the tip of my right index finger. Crazy huh, it only takes a second or so to realize it and you jerk your hand up but by then, the damage has been done. Because of my bad guys, my platelet count is almost below normal level which added to my troubles. This neuropathy is gonna kill me. Last week I was using a very sharp pair of sizzors, to cut some paper and snipped a small cut of my finger instead. So much blood came out, you’d think I hit an artery. What made it worse was the low platelet count because I couldn’t stop the bleeding. It took nearly two days for the blood to finally stop. So be thankful you don’t have my kind of neuropathy because each day is a brand new adventure. My Oncologist is still trying to figure out why I’m anemic for over three years. As the French say, “C’est la vie”, Such is life!!!!!