1. < Neuropathy

"Rubbery" Legs?

Posted by Ray Kemble @ray666, Apr 14, 2023

Hello, all!

I've been diagnosed with idiopathic polyneuropathy. For the longest time, I've been able to get around pretty well. It's only been recently that I've started to carry a can around with me. Most often indoors I don't need it. What has me concerned are my legs: they seem to be getting weaker, especially toward evening. I tell people it's a "rubbery" feeling like I can really trust my legs. My knees especially feel untrustworthy. Has anyone else experienced this? Have you ever come up with ways to un-rubberize your legs? I've not fallen, at least not yet, but going around, especially outdoors, I'm always on guard.

Ray (@ray666)

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

NJ Ed | @njed | May 3, 2023
In reply to @ray666 "Hello! I found what may have been the site you were looking at. I remain a..." + (show)
@ray666

Hello! I found what may have been the site you were looking at. I remain a bit puzzled as I read the symptoms common to the five stages: pain, numbness, and tingling. I haven't yet experienced pain or tingling; numbness, too, I wasn't aware of, not until an EMG showed that I have some in my feet. I guess the good news is I may still be in Stage 1, possibly getting close to Stage 2; the bad news is this is definitely a progressive disease, and, as so many have already discovered, "it's only a matter of time."

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Ray - When I went to Mayo in MN and was diagnosed with axonal sensory motor PN, the neurologist at Mayo said that in many cases, depending on the cause of the PN (good luck figuring that out), some patients do not experience pain, begins with tingle, turns to numbness and other symptoms. About 3 years into this nightmare, I did experience some minor pain in toes which lasted for about 12 - 18 months, as the numbness increased the pain decreased. As we know, every case is different as are the causes.

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ssjohns | @ssjohns | May 3, 2023
In reply to @casey1329 "I agree alcohol companies should put a warning on there labels. I wonder how long it..." + (show)
@casey1329

I agree alcohol companies should put a warning on there labels. I wonder how long it took the tobacco companies to be forced to put their warning on labels and hey what about guns. In the end it's all about money not safety.

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I did a Google search and there has been a label on cigarettes since 1965. There is also a warning on alcohol that there are risks to pregnant women
And children. You can find this information on WebMD. Apparently, cancer research groups say it is a group 1 carcinogen and these warning labels need to be updated because most people are not aware that it can cause health problems.

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erichendrix | @erichendrix | May 4, 2023
In reply to @ssjohns "I went to three different neurologist before I was finally diagnosed at my insistence. I had..." + (show)
@ssjohns

I went to three different neurologist before I was finally diagnosed at my insistence. I had many tests and none revealed anything. I had two sets of blood work, including the 4 hour glucose test and 24 hour urine collection which all came back fine. I went to a rheumatologist at the suggestion of one doctor. She ran a bunch of tests and nothing. I did some research and they talked about this EMG and needle conduction study which none of the doctors had even suggested. That is when I was finally diagnosed after eight years. Now I’ve been referred to Shands UF health in Gainesville Florida. My question now is, what do they plan to do there? Honestly, I think this is a waste of my time.
I have until September to decide or cancel the appointment. Like I said in a previous post, I have pretty much lost all faith with the medical establishment. If I know anything, is it that you have to be your own health care advocate and be in charge of your own destiny. These doctors are just way too busy earning money to take the time necessary to help guide you to get the proper care required for this condition. If I sound a little bit angry, it’s because I am.

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All indications I have are that effective treatments for neuropathy are largely beyond the reach of medical science. But hey, give it twenty years, and maybe they'll have something. All I have to do is wait twenty years. Maybe AI will come to the rescue? Until then, I'll try to do what I can while I can - which is, of course, always true, but lately, it has taken on a new sense of urgency. I read somewhere that the latest thinking about old age is that it starts at 27. I guess that makes me a living fossil.

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1 reply
ssjohns | @ssjohns | May 4, 2023
In reply to @erichendrix "All indications I have are that effective treatments for neuropathy are largely beyond the reach of..." + (show)
@erichendrix

All indications I have are that effective treatments for neuropathy are largely beyond the reach of medical science. But hey, give it twenty years, and maybe they'll have something. All I have to do is wait twenty years. Maybe AI will come to the rescue? Until then, I'll try to do what I can while I can - which is, of course, always true, but lately, it has taken on a new sense of urgency. I read somewhere that the latest thinking about old age is that it starts at 27. I guess that makes me a living fossil.

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Yes, and even if there was a new treatment with the latest technology insurance wouldn’t pay for it. They are about 20 years behind as well. It is is an inexcusable that more is not being done to help us to stay active in our senior year’s.

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1 reply
Ray Kemble | @ray666 | May 31, 2023
In reply to @ssjohns "Yes, and even if there was a new treatment with the latest technology insurance wouldn’t pay..." + (show)
@ssjohns

Yes, and even if there was a new treatment with the latest technology insurance wouldn’t pay for it. They are about 20 years behind as well. It is is an inexcusable that more is not being done to help us to stay active in our senior year’s.

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Hello, John

I noticed that a few months ago you had been in a discussion about Walkasins. Believe it or not, I only an hour ago heard that name for the first time, listening to one of the PN Foundations webinars. It seemed the exchange of posts you'd had about this device ended with more questions than answers. Did you ever learn more about Walkasins? I'm naturally curious – but also naturally skeptical – when I learn of a device like Walkasins, yet don't hear the entire PN community singing its praises.

Ray

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pattyann777 | @pattyann777 | Jun 1, 2023

I get a rubbery feeling in my legs but it comes from a pinched nerve in my back... You might get your back x-rayed... It happened before and after my nueropathy in my feet. Better safe than sorry.

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Ray Kemble | @ray666 | Jun 1, 2023

Hi, Patty Ann

Decades ago, I did have a situation where my piriformis muscle was pressing on a nerve (not my sciatic nerve, as I recall), which resulted in a case of drop-foot. I was fitted with a special boot, and the drop-foot cleared up in a matter of weeks. I say "cleared up," although I occasionally feel the slightest trace of that long-ago drop-foot still today. As for that "rubbery feeling" in my – one of my PN's several "gifts," LOL – one of the many tests I had done a few years ago was a lumbar MRI. The MRI showed no damage related either to my PN or to that "rubbery leg" feeling. You've asked an excellent question, though. Thank you for asking it!

Ray

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