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what is like to experience neuropathy as we age

Posted by nekcarolyn @nekcarolyn, Jul 1 3:12pm

recently it seems my neuropathy is getting worse. is that possible at 77?
the numbness seems to extending up my legs from my feet and ankles. A friend mentioned the same sensation.
I am starting to wonder how I will be in 15+ yrs given good health otherwise.

thanks

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Profile picture for Ray Kemble
Ray Kemble | @ray666 | Jul 6 6:51pm
In reply to @v8auto "I was diagnosed with axonal PN two years ago. No pain, luckily, as it affects the..." + (show)
Profile picture for v8auto @v8auto

I was diagnosed with axonal PN two years ago.
No pain, luckily, as it affects the nerves but not the nerve sheath.
Balance not so good, walking is a bit wavy on rough ground, and if I'm standing on a stool for instance I wobble about.
I have the 'tight socks' feeling, more so some days than others. Some night cramps which were quite bad, worse on nights when I've had alcohol although I'm not a heavy drinker. Helped by drinking half a glass of water before bed.
My legs/feet have reduced feeling below the knee.
It does not seem to be progressing upwards thank goodness.
The specialist says it may intensify but not necessarily progress upwards.
I think it important to do some regular exercises to preserve the strength in one's legs. Squats, especially.
What does the future hold? I suspect that none of us, nor our specialists, can really know.

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Hello, v8auto (@v8auto)

We appear to have a similar sort of PN: no pain, but balance woes. I agree: maintaining leg strength is paramount. Rebuilding leg strength once it's been lost can take a long, long time, but it's critical to keep working at it. In my case, "keeping at it" has proven to be doubling challenging as I've severe arthritis in my left knee. (My right knee is already a prosthetic.) Things like squats, thrusts, and sit-to-stands can be really painful. Nevertheless, believing in the importance of leg strength keeps me at it.

You mention " … if I'm standing on a stool for instance I wobble about." That made my eyes pop! You're actually able to stand on a stool? I had to give that up decades ago––in fact, your mentioning this recalls a play I did in the early 2000's, "Nicholas Nickleby." I played Nicholas's cruel uncle Ralph. The script called for me (trigger warning!) for Ralph to hang himself in the final act. The director wanted me to mount a stool to do this. I tried. I couldn't––I couldn't believe how unstable I was. I saw my PCP about this. She thought: a vestibular problem! What followed were days and days of examinations for a vestibular problem––unless the doctors said, It'll probably go away in time. Well, it didn't go away. I now believe Ralph's imbalance on that stool was an early sign of Ray's PN. It would be 20 years or more before it would be diagnosed as such.

You ask "What does the future hold?" I don't know. All we can do is keep doing our squats (ouch! 🙂 ) and hope for the best

I wish you well, v8auto.
Cheers!
Ray (@ray666)

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Profile picture for NJ Ed
NJ Ed | @njed | Jul 7 6:01am

@v8auto My symptoms absolutely match yours. In 2016, I was diagnosed with idiopathic axonal sensory motor PN and I have drop foot as well. This diagnosis was confirmed in 2020 by Mayo Clinic. Numbness, tight sock feeling, all below knees. Balance is a mess, now mostly walk with a cane especially outdoors. What does the future hold, jury is out on that one. Like you, I am happy that it appears not to be progressing above the knees. Let's hope it stays that way.

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arflmi33 | @arflmi33 | Jul 7 9:13am
In reply to @jchet "I am using tart cherry juice which seems to help with my hot feel 2Tbs in..." + (show)
Profile picture for jchet @jchet

I am using tart cherry juice which seems to help with my hot feel 2Tbs in an 8oz gas’s of water. I ordered it on Amazon.

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I use tart cherry juice at night. Helps me sleep and is supposed to be anti-inflammatory too.

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