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"Rubbery" Legs?
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)
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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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1 ReactionGood Luck and God Bless. Pat.
My husband after more tests than I can count and 4 neurologists was diagnosed with distal axonal sensory polyneuropathy or as he called it "Rubbery Legs" and yes he had fallen several times and couldn't get up. Now here's the kicker, this according to the 4th neurologist, an Irishman, the problem was caused by drinking. He stopped, 10 months sober, and is about 90% better. We had told all 4 neurologists about the drinking but only the Irishman listened. Seems to be an ignored issue by the medical community...good luck !
Good morning, @casey1329
It is striking, isn't it, how those of us with this particular condition, and after only a few years, end up having amassed a whole "family" of specialists! It says something about how determined we are to puzzle out what's afflicting us and how difficult it is to learn the answer. You may have read in one of my earlier posts how I, too, was left speechless when one of my neurologists, after looking over one of my brain MRIs, asked if I had once had a problem with alcohol. The truth was: I did. But that was 30 years ago. What about my brain MRI might have made this neurologist ask that question? That's when she explained that heavy alcohol use leaves its mark, an indelible mark that will be there for a clinician to see even decades later. Amazing, isn't it? Had I known that 30 years ago, might it have made any difference? Probably not. But who knows?
Ray (@ray666)
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1 ReactionOr maybe they’re just making an educated guess. There are many possible causes just like there are many different types of Neuropathy. If this were the case, don’t you think that alcohol companies would be required to put disclaimers on alcohol substances?
I think the doctors and researchers have dropped the ball on finding out exactly how this disease occurs and what can be done to prevent it and treat it. More research money needs to be made available to study this disease, since it affects millions and millions of people most of which are in their 60s and 70s.
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3 ReactionsShe was smarter 30 yrs ago then the ones I saw. The first one put my husband on medication for Parkinson's, the second had him getting IV infusions several times a month for C. I. D. P. The 3rd one just said he didn't know but maybe we should keep up with infusions and mind you he had MRI's. My husband like you also didn't have the pins & needles, numbness or tingling and only found out about the loss of feeling when the doctor ran a test and told him. Well, that's it for me. I wish you all the best. Keep posting.
So true. Hardly a day goes by I don't have reason to mention my neuropathy to someone who'll reply with, "Oh, no, you, too?"
Ray (@ray666)
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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2 ReactionsHere is a website for 5 stages --- https://www.selecthealthtc.com/five-stages-of-neuropathy/
here are some diagrams --- https://duckduckgo.com/?q=5+stages+of+peripheral+neuropathy&t=osx&iax=images&ia=images
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1 ReactionI 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.