How do you manage neuropathy and loss of balance and walking ability?

Posted by rachel44 @rachel44, May 18 2:02pm

How do you manage the situation when periferal neuropathy affects your balance and walking ability?

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When i first started noticing balance issues I began to do more walking and paying attention to pushing off with my feet. In participate in step aerobics and it has improved to point that I now do fast step aerobics using ankle weights. I also jog slowly. All this has improved my balance.

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Profile picture for bb0753 @bb0753

When i first started noticing balance issues I began to do more walking and paying attention to pushing off with my feet. In participate in step aerobics and it has improved to point that I now do fast step aerobics using ankle weights. I also jog slowly. All this has improved my balance.

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@bb0753 Have you noticed any muscle wasting?

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I had big doses of cisplatin chemo 7 years ago. My neuropathy and balance issues started then, and have continued to worsen. I saw an ad on tv for the new drug called Vivgart, and it mentioned neuropathy. Looking into it, I find the my cisplatin related neuropathy is "axonal" and is not treatable. However there is also myelin neuropathy, which is treatable. So had some tests to see if I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) or just CIPN (Chemotherapy Induced Peripheral Neuropathy) or maybe both. Still waiting for the neurologist to get back to me with his report. In the meantime, I downloaded the chatGPT app to my computer and asked the
question, how do you distinguish CIDP from CIPN. I was rewarded with a torrent of information, and specific questions from the chatbox about my history. I was VERY IMPRESSED by the quality of the inquiries, and the amount of detail in the responses. You can do this on your computer or your phone. The jury is still out for me because it's taking my neurologist FOREVER to give me all my test results; nerve conduction study, lumbar puncture labs of CSF, etc. etc. Give it a try, it's free for the free version. There is a $20/month deluxe version, but I don't know what value that adds. I hope to impress my neurologist with my questions the next time I see him!

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Profile picture for suetex @suetex

@bb0753 Have you noticed any muscle wasting?

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@suetex no in fact i have gotten stronger. At 72 my strength is good. Able to jog 5 miles and lift 10-15lb arm weights. Use 2.5 lb ankle weights for step aerobics. It has not fixed my feet neuropathy but it keeps me in shape and luckily no pain. Do whatever you are able to do now and add more as you can.

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Profile picture for bb0753 @bb0753

When i first started noticing balance issues I began to do more walking and paying attention to pushing off with my feet. In participate in step aerobics and it has improved to point that I now do fast step aerobics using ankle weights. I also jog slowly. All this has improved my balance.

Jump to this post

@bb0753
Our nerves are wrapped with an insulating fat called myelin.
Vitamin b12 as well as making new blood cells also makes myelin. Alcohol irritates our small 20 ft long intestines inner wall. B12 can't get thru.. so myelin production is reduced. So nerves hurt.
Sounds simple to me. ALCOHOL.

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Profile picture for bb0753 @bb0753

@suetex no in fact i have gotten stronger. At 72 my strength is good. Able to jog 5 miles and lift 10-15lb arm weights. Use 2.5 lb ankle weights for step aerobics. It has not fixed my feet neuropathy but it keeps me in shape and luckily no pain. Do whatever you are able to do now and add more as you can.

Jump to this post

@bb0753 Certainly the direction I want to take! Good advice.

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Profile picture for jamessaxo @jamessaxo

@bb0753
Our nerves are wrapped with an insulating fat called myelin.
Vitamin b12 as well as making new blood cells also makes myelin. Alcohol irritates our small 20 ft long intestines inner wall. B12 can't get thru.. so myelin production is reduced. So nerves hurt.
Sounds simple to me. ALCOHOL.

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Hello James !..Well this sounds quite interesting to me.
What do you know, or what can you tell me about frequent alcohol related headaches ?..👀

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Profile picture for ahimsa @ahimsa

I had big doses of cisplatin chemo 7 years ago. My neuropathy and balance issues started then, and have continued to worsen. I saw an ad on tv for the new drug called Vivgart, and it mentioned neuropathy. Looking into it, I find the my cisplatin related neuropathy is "axonal" and is not treatable. However there is also myelin neuropathy, which is treatable. So had some tests to see if I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) or just CIPN (Chemotherapy Induced Peripheral Neuropathy) or maybe both. Still waiting for the neurologist to get back to me with his report. In the meantime, I downloaded the chatGPT app to my computer and asked the
question, how do you distinguish CIDP from CIPN. I was rewarded with a torrent of information, and specific questions from the chatbox about my history. I was VERY IMPRESSED by the quality of the inquiries, and the amount of detail in the responses. You can do this on your computer or your phone. The jury is still out for me because it's taking my neurologist FOREVER to give me all my test results; nerve conduction study, lumbar puncture labs of CSF, etc. etc. Give it a try, it's free for the free version. There is a $20/month deluxe version, but I don't know what value that adds. I hope to impress my neurologist with my questions the next time I see him!

Jump to this post

Thank you quite interesting though.
It's somehow strange how our bodies inside out, becomes so fragile and brittildle as we become older ?..🫲😋 Proper lifestyle seems to be the main character here for optimal health, and prolonged living.👀

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Profile picture for suetex @suetex

@bb0753 Certainly the direction I want to take! Good advice.

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@suetex best of luck to you!!

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