1. < Neuropathy

Lost my legs and now both arms to Neuropathy.

Posted by bobbyd1017 @becky1024, Aug 31, 2022

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!!!!!

Interested in more discussions like this? Go to the Neuropathy Support Group.

bobbyd1017 | @becky1024 | Sep 10, 2022
In reply to @casey1329 "My husband ( 71 yrs.) is no where near as ill as you poor souls are..." + (show)
@casey1329

My husband ( 71 yrs.) is no where near as ill as you poor souls are but for whatever it's worth here is his story. Around the end of March he got out of bed and fell. His legs couldn't support him. He went to the hospital but all they could find was DVT. He came home had a few falls but slowly started to get better until the end of May when he couldn't move his legs to get out of bed. Back to the hospital, a supposedly a better one, where he saw more specialists than before. After 6 days he was discharged with a diagnosis of Parkinson's and again DVT, which was treated and cleared up in April. Finally, we found a neurologist who said he didn't have Parkinson's but diagnosed him with with Chronic Inflamatory Demyelinating Polyneuropathy (CIDP). She did the needle & electric current muscle & nerve test, EMG. He is now getting monthly infusion of Gamubex-C, human antibodies, and he is improving. Perhaps his treatment might help you.

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Sorry for taking so long to answer because for some reason, I wasn’t receiving any notifications. My body is so fragile since I have a number of rare health problems and birth defects. I have a blood condition called MGUS, it’s precancerous cells that are progressing to either Multiple Myeloma or a rare form of Non Hodgkin’s lymphoma. It was these bugs that ate the myelin coating off the entire pain nerves in my legs from mid thigh to the tip of my toes. So the nerves have been completely destroyed and are dead. It did that to both legs and feet and is destroying the pain nerves in both arms and hands now. I’ve done research and the scary part is once they’ve destroyed the pain nerves in both arms and legs, the bugs may do the same thing to my motor nerves. Those are the nerves that allows your arms and legs to move. If that happens, I’ll end up a quadriplegic, non functional human being. But hey, I’m still here when 78 years ago, doctors told my mother to take me home because I was dying and nothing could be done to save me. Thank you for your post and hope your husband gets completely cured.
@becky1024

REPLY
bobbyd1017 | @becky1024 | Sep 10, 2022
In reply to @mecha "Tengo neuropatía periférica. Me causa algo de espasticidad en mis piernas sobre todo en los pies..." + (show)
@mecha

Tengo neuropatía periférica. Me causa algo de espasticidad en mis piernas sobre todo en los pies y mi equilibrio es muy precario y solo puedo caminar de manera muy lenta dentro de mi casa.Salir a la calle
sola me da terror ante la posibilidad de caerme, pero no siento ni nunca he sentido el más mínimo dolor. Este problema data de más o menos 10 años ,con un avance bastante lento. Durante casi cinco años he tomado tamoxifeno y hay quienes opinan qué puede ser causa de neuropatías He perdido fuerza en las manos pero por ahora las manejo y puedo decir que bastante bien. Y después de haber leído las historias ,el dolor de otras personas que lo han transmitido en este espacio ,diría que casi me siento avergonzada. Pediré alivio, todo el alivio posible para los que están sufriendo este problema. Gracias por leerme.

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I share the same problems that you do and learned a few things that helps. Because your brain cannot feel the floor or sidewalk you walk on, it should cause falling problems. What I found is that if you look down, it helps your brain to understand there is something to walk on. In my case, my brain stops me from walking at all, till I look down and allow the brain to see it. Taking small steps helps the brain to remember there is something down there to walk on.

As for balance, side to side balance is not affected much but the front to back balance is dangerous and causes you to fall. Think of the middle of your foot as the place where your body balances itself. The front half of your foot keeps you from falling forward. The back half or heel is very difficult to balance on so you are most likely to fall over backwards. But if you are not careful, you may feel yourself falling backwards and lean towards the front and fall. I have fallen many times so I use two canes or walking sticks to help balance myself. Because the ground outside is uneven, be careful what you walk on because it will make you lose your balance. Hope this advice helps.

REPLY
1 reply
NJ Ed | @njed | Sep 11, 2022
In reply to @becky1024 "I share the same problems that you do and learned a few things that helps. Because..." + (show)
@becky1024

I share the same problems that you do and learned a few things that helps. Because your brain cannot feel the floor or sidewalk you walk on, it should cause falling problems. What I found is that if you look down, it helps your brain to understand there is something to walk on. In my case, my brain stops me from walking at all, till I look down and allow the brain to see it. Taking small steps helps the brain to remember there is something down there to walk on.

As for balance, side to side balance is not affected much but the front to back balance is dangerous and causes you to fall. Think of the middle of your foot as the place where your body balances itself. The front half of your foot keeps you from falling forward. The back half or heel is very difficult to balance on so you are most likely to fall over backwards. But if you are not careful, you may feel yourself falling backwards and lean towards the front and fall. I have fallen many times so I use two canes or walking sticks to help balance myself. Because the ground outside is uneven, be careful what you walk on because it will make you lose your balance. Hope this advice helps.

Jump to this post

I have sensory motor peripheral neuropathy and you are right. If I look down when walking, it does give me better balance and I watch my feet touch the floor. Little feeling on bottom of feet but my brain sees my foot touch floor and it's helpful. Walking outside on uneven surfaces is an issue but being aware of slight increases and decreases helps with balance. I use a cane as well, I feel it has become an extension of my arm. I too have fallen a few times and I've become a furniture toucher over time even with a cane. Way less falls, been well over a year.

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