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Periodic Contributor

Asking Advice: Neuropathy

Hi, everybody. Recently, I've been experiencing loss of feeling in my feet and my right leg. After some orthopedic tests, I learned, just yesterday, that I have peripheral neuropathy. The doctor advised me to see a neurologist, which I will do. I'm 71. My dad had the same condition when he was a little older than I am now.

I'm not handling this as well as I would like to. This is the first major medical issue I have had since I was 38, so I guess I'm spoiled. When I got the news, by phone, I felt full of grief. Not fear, but sorrow. I felt close to tears but couldn't cry. I kept thinking, "What is this thing doing in me? It doesn't belong here!" I also did some Internet research about how much worse this condition can get as it progresses, but instead of getting scared, I felt sadder. So I ate some Twinkies. 

I wish I could be more level-headed and matter-of fact about this. I am a realist. I've always known that things like this happen as we get older, but still, I wasn't prepared for this. I know I could be a lot worse off, so I don't want to sound whiney. I would just like to be able to look at this situation in a way that doesn't make me want to eat Twinkies! 

 

Can anyone give me some advice? I'd really appreciate it. Thanks. -- Clare

 

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Regular Social Butterfly

I feel a little nosey because I have not experienced this condition first hand (yet), but it captured my attention so I did some reading.  It sounds like what you're describing is Sensory Peripheral Neuropathy.

Including some links to what I read.  Found the one from Johns Hopkins most informative:

 

https://www.hopkinsmedicine.org/health/conditions-and-diseases/peripheral-neuropathy 

 

https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061?ge... 

 

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fa... 

 

 

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Periodic Contributor

Hi, and thank you for these helpful posts. I appreciate the important information. 

Sincerely, 

Clare

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Social Butterfly

Clare, so grateful for your post on this! My medical history was pretty much as yours; hospitalizations only for child birth, but one out-patient for negative cervical cancer. This was amazing as I had 13 aunts/uncles and 9 of the 10 girls passed from a cancer; my mother did not.

 

Some consider our disease as nothing, I think especially with the COVID variants; but it is real especially for many of us who haven't used and possibly abused the health insurance / Medicare / Medicaid systems.

 

If you learn of any hopeful or successful therapy for our ages-old disease, please share!

 

#StaySafe

 

 


#VegasStrong
Phil Harris, actor and showman, to John Fogerty of CCR: “If I’d known I’d live this long, I’d have taken better care of myself.”
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Periodic Contributor

Hi. I will share anything of value that I learn. I'm really sorry for what happened in your family history, but it's a blessing that your mom wasn't affected by it. 

 

As long as I keep busy this thing I have is easy to ignore. It doesn't hurt, and has not (yet) interfered with my mobility. I will do my best to avoid worrying about what it could become. That's a waste of time, because it's unknowable right now. 

 

Thanks for your advice! 

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Honored Social Butterfly

@higgie,

 

It's all part of getting older and it is better than many alternatives. I experience the same symptoms as you.

 

When I had my doctor set me up for physical therapy, the therapist had me walk up and down a hallway, step up and down steps, and made me balance on one foot and pronounced me as NOT IN NEED of physical therapy. She said I performed better than most 70 year olds, even with my neuropathy. She said that chemo, which I had two years ago, could have been a factor or could be just age. She said it could eventually go away or might never go away or might get worse.

 

I counted my blessings that this malady is what it is and not something drastically worse and I approach it in a positive manner such as that.

 

Finally, what is wrong with a Twinkie craving.

 

After 7 decades of life's experiences, one deserves a Twinkie any time they want one!!!!!!

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Periodic Contributor

Thank you very much for your very wise advice and for sharing your experience. I feel a lot better thanks to your words. And I won't feel guilty next time it's Twinkie Time! 

 

Thanks again!

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Periodic Contributor

Hi, Clare,

FYI, I've had peripheral neuropathy for probably six or seven years. I don't have diabetes or any drug reactions that could have brought it on, and I'm younger than you by almost a decade.

I did have a situation that likely contributed: All those years ago when looking for one of our cats who had run away (found after 47 days, still at home now), I fell five times in one day. I tripped over various curbs, gravel and twigs as I was traipsing about. I have inherited foot problems that probably account for those falls and have had foot surgeries since.

Peripheral neuropathy is not the end of the world, especially if your version doesn't cause tingling like when a foot goes to sleep. That type is painful and annoying to people who have it.

But now you have to pay more attention to things that you might have taken for granted. I have to watch my balance, especially important as you age because falls can create more problems, and sometimes where I'm putting my feet because I've stubbed toes not realizing I was so close to a table leg or some such thing. Essentially, I often lose that sense of place on where my feet are in relation to the rest of me and stationary things around me.

Conditions like these are a bummer as we get older. Some are fixable. I do hope that yours might have a cause, such as a medication interaction, that can be fixed.

I certainly don't "feel" my chronological age. I still feel the same inside my head as I did when I was in my mid-30s. That may be another reason you were so upset. This is the first thing that made you feel old.

Moderate walking, making sure that I get my 10,000 steps in, has helped some. Sitting around does not. Good luck to you, especially as the weather gets chillier.

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Periodic Contributor

Hi, and thank you for your very valuable advice. The only cause I can think of for my neuropathy is hereditary. My father had it, and he once had a car accident because he stepped on the accelerator instead of the brake, because his foot couldn't feel which was which. No one was hurt, though. 

I have had several weeks of physical therapy intended to strengthen my balance, and have been given a set of exercises to do at home. Hopefully I won't ever have to say "I've fallen and I can't get up."

You are so right about that mental feeling of being younger than our chronological years. I feel about five most of the time! That's why it hurt so much to get this news. I'm a lot calmer about it, now though. I just see myself, not as old, but as higher maintenance. 

Thanks again!

Cheers, 

Clare

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