1. < Neuropathy

How to best explain?

Posted by Ray Kemble @ray666, Feb 27, 2023

Hello!

I have been asked to write something about my experience living with idiopathic polyneuropathy. I have found that since receiving my diagnosis what a tough time it can be to explain to friends what the symptoms "feel" like. Most of my friends assume I am suffering a terrible dizziness. I tell them, "No, I don't feel 'dizzy'." I tell them my head remains clear. The best I have been able to come up with so far is to tell my friends: "My polyneuropathy feels more like I am onboard a ship in a lightly rolling sea and I am being gently tossed from side to side." I am wondering if any of you have found a better way to explain what the sensation is like. I'd love to hear what you've come up with. Thanks!

Ray
@ray666

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Ray Kemble | @ray666 | Mar 2, 2023
In reply to @lecowing "I wish you luck going forward. I am now 85 and the numbness and balance have..." + (show)
@lecowing

I wish you luck going forward. I am now 85 and the numbness and balance have got much worse since I turned 80. I can shuffle around the house without a cane but need a cane or rollator walking outside.

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Good morning! As you probably know, I'm 78. I can trace the onset of my balance problem way, way back, to the early 2010s when I was in my 60s. Back then, it wasn't much of a problem: a few spells of "funny" balance every so often. Gradually, though, it got worse, little by little, to where it's at today: my woozy balance, some degree of which is with me all day, with periods (usually an hour or two each day, and usually late in the day) when it is worse. It's been a mystery, both for me and] my doctors. ––Ray

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Ray Kemble | @ray666 | Mar 2, 2023
In reply to @njed "Ray - As it is often said, each person has to figure out what works best..." + (show)
@njed

Ray - As it is often said, each person has to figure out what works best for her or his particular situation. I'm glad you were able to find orthotics that help you. I am finding one thing a little odd lately. I have the feeling that the neuropathy tends to level off for a while, then a change takes place...normally not better. My last change which involved worse balance in conjunction with increased neuropathy took place around early November. The increase was in neuropathy where it already exists, below knee but not moving upward towards knee. Been same for about 4 months.

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Hi, Ed. My PN varies, too, but not months between episodes but within the same day. Ordinarily, I'll feel fine ("fine" meaning I still zig-zag, but it's manageable) all morning and through most of the afternoon, but then starting around 4 or 5 pm, I'll get super woozy; it will fade, however, around 7 or 8 pm. I've explained this to my doctors, but they're as puzzled as I am. ––Ray

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1 reply
NJ Ed | @njed | Mar 2, 2023
In reply to @ray666 "Hi, Ed. My PN varies, too, but not months between episodes but within the same day...." + (show)
@ray666

Hi, Ed. My PN varies, too, but not months between episodes but within the same day. Ordinarily, I'll feel fine ("fine" meaning I still zig-zag, but it's manageable) all morning and through most of the afternoon, but then starting around 4 or 5 pm, I'll get super woozy; it will fade, however, around 7 or 8 pm. I've explained this to my doctors, but they're as puzzled as I am. ––Ray

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Ray, yes - I believe this can be typical with a lot of folks with PN. By the end of the day, I feel washed out 5 days out of 7. It's tiring. I tend to start out the day on the upside which is 6AM each day and by about 8PM I'm feeling it. I blamed it on age but then realized it was the PN sneaking up on me. I think it takes a lot of energy dealing with balance and other related issues involving PN.

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granpuh | @granpuh | Mar 2, 2023

Just have been dignosed with neuropthy. No pain just numbness in feet, legs arms, and fingers. Very week muscles. I have fallen and played hell getting back up. i never was taking getting old very well. This has made it worse. Cant dance anymore. I have a disabled grandson i cant help anymore. sitting home has become the norm. i want to know what "home remedies" work with easing the numbness.

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Ray Kemble | @ray666 | Mar 2, 2023
In reply to @stallen "Ray, I started noticing leg sensations and perceived weakness back in 2017…neurologist did blood work, brain,..." + (show)
@stallen

Ray,
I started noticing leg sensations and perceived weakness back in 2017…neurologist did blood work, brain, neck and lumbar scans as well as NCS/EMG. Eventually neuropathy showed up…although she never said what type. My own research tells me it must be large fiber type as the NCS/EMG showed it.
A few years later I tested positive for some autonomic neuropathy. While the neurologist said she doesn’t know cause, I am pre-diabetic…some studies show that could be a cause. The neurologist provides little suggestions. As I mentioned previously, it has continued to gradually progress with more numbness, weakness and fatigue. Im still able to walk daily ( a couple miles max) but it’s getting tougher and balance has worsened lately. I’ve had undiagnosed motion/ balance issues since late 20’s which magnifies the issue.
Thinking back I think there were signs prior to 2017…likely small fiber…the neurologist told me once if you have small fiber ( or large)…you have or will have the other. Ray, were you tested for autonomic neuropathy?
Steve

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Steve,

Stop me if I've already mentioned this but I first noticed some short-term (30 minutes?) weirdness in my walking way back in 2012, but because it was short-lived I never even mentioned it to my primary doc. But then, year by year, it got worse: more bothersome, making un-fun things I used to really enjoy, like trail and city streets walking.

And I too have had all the tests: cervical, thoracic, and lumbar X-rays, CT and MTI scans, and most recently an EMG. You mention "large fiber." I'm not familiar with that as a type of neuropathy. I'm going to have to look that up. All my neurologist said, after the EMG (and a long pause), was "idiopathic polyneuropathy." He sent me for a second opinion, and I received the same diagnosis.

Even more recently than the EMG, I was found to have a low red blood cell count (possibly anemic, but that hasn't been confirmed yet). Later this month I will be meeting again with my neurologist to discuss whether a low red cell count might have any bearing on my neuropathy.

Autonomic neuropathy? Mmm? That's another term I'm not familiar with. As far as I know, I've not been tested for it.

Ray

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