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My PN is better'n your PN! Naw, naw!

Posted by Ray Kemble @ray666, Feb 16 4:08pm

Hello!

I'd never thought to rank my PN. My PN is predominantly large-fiber, so my most troublesome PN symptom is poor balance. Others of us have small-fiber PN, where sufferers' greatest challenge is managing pain. The other day, a friend with small-fiber PN said to me, "At least you have the better kind of PN." Better? I'd never thought of my PN as "better." Or "worse," for that matter. (Although, had I a choice in the matter, I'd have chosen large-fiber, with its poor balance; I'd have begged not to have to suffer the pain of small-fiber.) My approach, accepting that my PN is incurable and likely progressive, is to say to myself, "it is what it is," and get on with my better-balance exercises. However, I did think it odd that someone would look upon the different kinds of PN, with their different sets of symptoms, and think it was okay to rank them: "better," "worse," "so, so," "My PN's not for sale," "I'll trade my PN for yours any day!" 🙂

Ray (@ray666)

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

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lynfrommn | @lynfrommn | Feb 21 1:03pm

Female here, pushing 79 YO really hard. In 2021 I was diagnosed via EMG with ideopathic distal axonal sensory polyneuropathy, most likely age related. Symptoms include numbness, tingling, burning feelings from my feet up to my lower thighs. Those feelings have been slowly moving up my legs since before diagnosis. Because I'm not conceding to old age, I'm managing symptoms with 500 mg of gabapentin at bedtime only and during the day I make a point of being mindful about moving around due to the spongy walking sensation and wonky balance. After following this site for a couple of years, I realize how blessed I am that my neuropathy is mild compared to other folks. Like everyone else, I hope that someday there will be a "fix." Wishing everyone well in your neuropathy journey!

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Ray Kemble | @ray666 | Feb 21 2:13pm
In reply to @lynfrommn "Female here, pushing 79 YO really hard. In 2021 I was diagnosed via EMG with ideopathic..." + (show)
Profile picture for lynfrommn @lynfrommn

Female here, pushing 79 YO really hard. In 2021 I was diagnosed via EMG with ideopathic distal axonal sensory polyneuropathy, most likely age related. Symptoms include numbness, tingling, burning feelings from my feet up to my lower thighs. Those feelings have been slowly moving up my legs since before diagnosis. Because I'm not conceding to old age, I'm managing symptoms with 500 mg of gabapentin at bedtime only and during the day I make a point of being mindful about moving around due to the spongy walking sensation and wonky balance. After following this site for a couple of years, I realize how blessed I am that my neuropathy is mild compared to other folks. Like everyone else, I hope that someday there will be a "fix." Wishing everyone well in your neuropathy journey!

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Hello, @lynfrommn. You write, " After following this site for a couple of years, I realize how blessed I am that my neuropathy is mild compared to other folks." I, too, had a similar wake-up call, thanks to Connect. While I don't believe ranking one's PN against another's, I am grateful that my chief––if not only––PN symptom is tipsy balance. By going slow and paying good attention, I can manage tipsy balance. And tipsy balance is a non-issue when I'm sitting and sleeping; that, right there, is a blessing. Here's to you, @lynfrommn, and to all here browsing the Neuropathy forum! Cheers! –Ray (@ray666)

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Ray Kemble | @ray666 | Feb 21 3:12pm
In reply to @db72 "@ray666 thank you Ray for your kind wishes! One more thought. I think one of the..." + (show)
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@ray666 thank you Ray for your kind wishes!

One more thought. I think one of the reasons two people with what seems to be the same diagnosis may have quite different symptoms might be due to the cause, and also to other underlying conditions. Plus we’re all different, right? After doing all the usual investigations as to the cause of mine, it was classified as idiopathic, meaning of course 🤷‍♀️.

That said, when I first became extremely ill 40 years ago with an Epstein Barr Virus infection that turned into Chronic Fatigue Syndrome, I was bedridden for the first several years and have remained disabled ever since. The virus attacked and caused damage to my nervous system from the very first day. I was healthy as a horse the day before I got sick. I’ve had vibrationing sensations in my legs (and many other symptoms) ever since then to some degree. But over the last 20 years the numbness, tinnitus, balance problems gradually set in and progressed.

My neurologist believes the initial EBV infection triggered an autoimmune response resulting in ME/CFS and later the advancement of the PN. A lot of that is speculation but it’s based on a lot of good research opinions.

All that to say, I don’t think you should worry that yours will necessarily follow the same course because mine really began 40 years ago with a virus. Plus I have 2 autoimmune conditions, and autoimmunity runs in my family.

And yet, we both seem to have the “same” diagnosis. I think there’s just so much they really just don’t know yet about PN and it’s many different causes and forms.

Wishing you all the best as well!
Suz

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That's so true, Suz (@db72): To each, his own (or her own) set of symptoms. After all, there's a reason they call it "idiopathic." Some things are mysteries and must remain mysteries. One of my neurologists had asked me if I'd been a heavy drinker. I had, but going on 40 years ago. I thought, "Ah, is that it: my drinking?" He said, "No. It can be a contributing factor for some, but not for you, Ray. There's nothing on your brain MRI to suggest that drink might have played a role." I've long since come to accept that I'll most likely never know why I have the particular PN that I have. And as for my PN's symptoms? I'll just deal with them as they come along. // I hope you're having a good weekend, Suz! –Ray (@ray666)

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Profile picture for SusanEllen66 Susan McMichael
SusanEllen66 Susan McMichael | @SusanEllen66 | Feb 21 5:06pm

@ray666
You forgot the “boo boo”

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Ray Kemble | @ray666 | Feb 21 5:44pm

The "boo boo"? Uh-oh. (But you have me scratching my head … 🙂 )

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joanland | @joanland | Feb 21 7:10pm

Today, while perusing an email from Peripheral Neuropathy Group, they show home exercises to help with balance, and what did I see but a ToePro! It is in the February Institute of Peripheral Neuropathy email and it is titled "Regain your balance: Exercises for the brain and body." They give several exercises that don't involve the ToePro, so I think I'll give those a try.

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Ray Kemble | @ray666 | Feb 22 11:48am
In reply to @joanland "Today, while perusing an email from Peripheral Neuropathy Group, they show home exercises to help with..." + (show)
Profile picture for joanland @joanland

Today, while perusing an email from Peripheral Neuropathy Group, they show home exercises to help with balance, and what did I see but a ToePro! It is in the February Institute of Peripheral Neuropathy email and it is titled "Regain your balance: Exercises for the brain and body." They give several exercises that don't involve the ToePro, so I think I'll give those a try.

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Good morning, Joan (@joanland). I'm so tempted to take my Toe Pro out for a spin, but I promised my PT that I'd hold off and give him a chance to show me how to use it properly. Instead, my new Toe Pro sits quietly beside my Mr. Coffee. Patience, Ray, patience! 🙂 –Ray (@ray666)

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