Lost my legs and now both arms to Neuropathy.

Posted by becky1024 @becky1024, Aug 31 10:15am

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 group.

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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I’m so sorry you are going through this horrible situation. I cannot imagine what you are struggling with each day. 🌻

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@christmastime

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

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@becky1024

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

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Thank you for your very kind reply.
Your beautiful spirit is shining.
I appreciate your advice regarding my husband and I will do as you suggested.
You are a true warrior and I hope you have the best birthday ever.

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Thank you but my body has baffled to many doctors. In 2019, fourteen different doctors from four different departments nearly killed me. They’re textbook knowledge was useless because as the saying goes “You couldn’t see the forest for the trees,” They guessed everything they could think of but the correct one and as it turned out I was only 25 minutes from death because I had 3 blocked holes in my heart as my blood pressure shot up to 211/113.

Because of a 1 in a million heart birth defect, I’m literally living from one heartbeat to the next. There is no tomorrow for me, I can’t even guarantee another minute of life and your husband pities himself. I can’t even see the light at the end of the tunnel because I’m losing my eyesight and your husband is depressed. There isn’t a part or organ in my body that’s not under attack from my bad guys eating me alive and he doesn’t want to go outside. But ya know, my maternal grandfather was Native American and his will to survive is instilled in me so strongly, that I force my legs to move, my heart to beat, my eyes to see the beauty of a rainbow over a mountain. As you can guess, I’m a poet and a professional writer but mostly, I’m alive and a human being in crisis. Take Care, glad I could lift your Spirit a little higher. @becky1024

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Hi Becky- I'm a retired Occupational Therapist- please consider asking your PCP for an OT referral and make an appointment with the OPD at a Rehab Hospital near you . The OTs there will have the most experience with the deficits you're experiencing and will have sample items to try. There are ALOT of adaptive devices which can help make performing your activities of daily living easier and safer. Google and take a look at the Sammons Preston catalog- especially personal care and kitchen items- you'll be surprised! I have PN and use several items everyday.
Best wishes always!

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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.

REPLY
@becky1024

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

Jump to this post

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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@centre

Hi Becky- I'm a retired Occupational Therapist- please consider asking your PCP for an OT referral and make an appointment with the OPD at a Rehab Hospital near you . The OTs there will have the most experience with the deficits you're experiencing and will have sample items to try. There are ALOT of adaptive devices which can help make performing your activities of daily living easier and safer. Google and take a look at the Sammons Preston catalog- especially personal care and kitchen items- you'll be surprised! I have PN and use several items everyday.
Best wishes always!

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Sorry it took so long to answer but I wasn’t receiving any notification for over a week. I was going to OT for over 2 months but had to stop because it was causing injuries to other parts of my body, like my spine. I understand what your saying but my body is so damaged from to many rare health issues and 2 near fatal car accidents. At present, my heart is so messed up, my doctor said I’ll die between the first half of a heartbeat and the second half and can’t guarantee me another second of life. So I’m just glad to be here till my hands and legs become completely useless and then I’ll be in a wheelchair I won’t be able to operate. Thank you for your advice, I’ll try to look up the link you gave me.
@becky1024

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@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.

Jump to this post

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

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@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.

Jump to this post

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.

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