1. < Neuropathy

Positivity only fellow friends!

Posted by mikead63 @mikead63, Mar 19 10:09pm

I read so many personal stories of neuropathy pain and suffering that we are going through. Having recently been diagnosed, and knowing that it will probably get worse not better, I would like to ask that this specific discussion to be from those of you who have been fortunate enough to have actually had positive results and are actually getting better. Why and how!? Only positivity my fellow neuropathy friends.
Mike

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

26sabrina | @26sabrina | Mar 26 10:52am
In reply to @bjk3 "Hi, @ray666, I got a huge chuckle over your description of the British murder mysteries ~..." + (show)
@bjk3

Hi, @ray666,
I got a huge chuckle over your description of the British murder mysteries ~ "perp-walked off to jail" ~ 😂🤣 I've not gotten into them even though there seems to be a plethora of options and I do watch PBS (no cable). My daughter really likes them, too ~ and as it happens she and her husband are on holiday in London (and then in Scotland for a few days -- plenty of crime stories originate there, too). I may need to enlarge my capacity to adapt to yet more criminal behavior - Ha!
Are you seeing a pt these days? I'm definitely noticing a decline in mobility since my pt stopped taking Medicare payments in January. Time to call for a new referral. I really hope your left hip/leg can respond to some kind of alternative to hip surgery. I'm no medical advisor but from my experience these surgeries may tend to complicate peripheral neuropathy.
Nonetheless, here's to a Terrific Tuesday!
Barb

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Maintain positive mindset. Being negative doesn't help and could make symptoms worse.

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William | @willgranger1127 | Mar 26 12:11pm

I just finished 12 electro-therapy and red light sessions ($$$) at Select Health of the Carolinas. Expensive, but I had to try it. The chiropractor said it could take 12 to 18 months to experience the full effect of the treatments. I take a lot of vitamins, but added MediNox Pro, which has L-Carnatine and L-Arginine in it for increased blood flow. I also added an alpha-lipoic-acid supplement. I purchased my own TENS unit from Oxiline.com and did my own electro-therapy other than the 2X per week at the clinic. I use ankle compression sleeves. I keep active and walk as much as I can. I seem to be showing a good bit of improvement. I take gabapentin 2X per day and an ibuprofen at night seems to work for sleep without much leg discomfort. Anyway, it takes a lot of looking at what others are doing and their results. Some things work. Some don't (seem to). I'll stay on the TENS unit, but may cut that back to every other day. I could go on, but I need to cut the grass....

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Ray Kemble | @ray666 | Mar 26 3:43pm
In reply to @bjk3 "Hi, @ray666, I got a huge chuckle over your description of the British murder mysteries ~..." + (show)
@bjk3

Hi, @ray666,
I got a huge chuckle over your description of the British murder mysteries ~ "perp-walked off to jail" ~ 😂🤣 I've not gotten into them even though there seems to be a plethora of options and I do watch PBS (no cable). My daughter really likes them, too ~ and as it happens she and her husband are on holiday in London (and then in Scotland for a few days -- plenty of crime stories originate there, too). I may need to enlarge my capacity to adapt to yet more criminal behavior - Ha!
Are you seeing a pt these days? I'm definitely noticing a decline in mobility since my pt stopped taking Medicare payments in January. Time to call for a new referral. I really hope your left hip/leg can respond to some kind of alternative to hip surgery. I'm no medical advisor but from my experience these surgeries may tend to complicate peripheral neuropathy.
Nonetheless, here's to a Terrific Tuesday!
Barb

Jump to this post

Hi, Barb (@bjk3)

You asked if I'm seeing a PT these days. Yes, and no. No, only because I'm between insurance allocations. My PT, whose name is Serena, was hoping we'd restart twice-weekly meetings next week. I phoned Serena only this morning to ask if we could hold off restarting for a few weeks. For one thing, my partner and I will not finish our move until mid-month. For another thing, I'll be seeing the orthopedic doc this coming Wednesday. I'm hoping he'll tell me to quit moving 10-ton boxes. 🙂 I'm hoping he'll NOT say, "Mmm, Ray, this is serious." (I know I have arthritis in that hip. I've known that for years. I'm reasonably sure last weekend's added ache was the result of trying to move too much, too quickly. My hip till aches, but not like it did last weekend.)

I never would have guessed I'd be such a sucker for British murder mysteries. It began with the Inspector Langley Mysteries, followed by Shetland, and now Vera. I've always known I have an addictive personality, but this is ridiculous! 🙂

Cheers!
Ray (@ray666)

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Ray Kemble | @ray666 | Mar 26 3:55pm
In reply to @mikead63 "My wife and I love the British murder mysteries! Thanks to "closed caption" we can actually..." + (show)
@mikead63

My wife and I love the British murder mysteries! Thanks to "closed caption" we can actually understand them now! Years ago I started a business in London for a company I was working for at the time. I spent the next few years visiting London, hiring personnel and expanding the business. Loved the people! However it took me a little time to understand certain dialects! No closed captions in conversations!!

PT really helped me with a spine problem I had a few years ago. So much so that I was able to cancel my surgery. When I had my hip replaced a little over a year ago I asked my Ortho Doc for a PT referral. He said I didn't need it! He said just "Walk, Walk, Walk." Well my permanent residence is in Minnesota and this was January with the temperature at the time below zero and every walkway or sidewalk had ice or snow on it! And, it would be this way for a few months!
I just looked at him and said, in a heavy Norwegian accent, you mean Walk, Slip, Fall, and come back to you for my other hip! He didn't laugh but the nurses did!!

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Hi, Mike @mikead63

I can see the scene: "I just looked at him and said, in a heavy Norwegian accent, you mean Walk, Slip, Fall, and come back to you for my other hip! He didn't laugh but the nurses did!!" I laughed, too. It worries me when a doctor doesn't laugh. I'll sit there, puzzled, wondering if he's seen something in my X-ray that he's not telling me about. 🙂

Thanks god for captioning! Except some characters, usually the ones which the most impenetrable dialects, speak so rapidly, even with captions, my eyeballs can't keep up. 🙂

Cheers!
Ray (@ray666)

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Ray Kemble | @ray666 | Mar 26 4:11pm
In reply to @centre "Ray- since you brought it up, I’m still astonished and in awe that you beat sepsis-..." + (show)
@centre

Ray- since you brought it up, I’m still astonished and in awe that you beat sepsis- it’s a tribute to your medical providers, a tribute to your determination to closely follow the MD and Nursing instructions, a tribute to the infection control nurses and procedures in place at every inpatient facility you were in, and a tribute to your partner for her physical and mental support.
I’ve worked in acute care hospitals, rehab hospitals, outpatient clinics, and nursing homes. Sepsis is a killer and you beat it- wow….

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Hi, entre (@centre)

It's probably just as well I didn't know what sepsis was when I went into the hospital. I might have grown a little suspicious, however, to see all those clinical types with their deeply furrowed brows hovering around me. "What gives?" I kept asking. "It's just a little 'something,' isn't it?" It was quite somedays later before I learned what sepsis was all about. I credit my partner, the morning I said I "felt a little funny"––"funny" in a way that was decidedly NOT funny––with insisting I phone 911. She probably saved my life.

Ray

REPLY
bjk3 | @bjk3 | Mar 26 9:11pm
In reply to @mikead63 "My wife and I love the British murder mysteries! Thanks to "closed caption" we can actually..." + (show)
@mikead63

My wife and I love the British murder mysteries! Thanks to "closed caption" we can actually understand them now! Years ago I started a business in London for a company I was working for at the time. I spent the next few years visiting London, hiring personnel and expanding the business. Loved the people! However it took me a little time to understand certain dialects! No closed captions in conversations!!

PT really helped me with a spine problem I had a few years ago. So much so that I was able to cancel my surgery. When I had my hip replaced a little over a year ago I asked my Ortho Doc for a PT referral. He said I didn't need it! He said just "Walk, Walk, Walk." Well my permanent residence is in Minnesota and this was January with the temperature at the time below zero and every walkway or sidewalk had ice or snow on it! And, it would be this way for a few months!
I just looked at him and said, in a heavy Norwegian accent, you mean Walk, Slip, Fall, and come back to you for my other hip! He didn't laugh but the nurses did!!

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@mikead63 ~
Maybe he hadn't time for his regular Lutefisk breakfast that day?
Or, maybe he hadn't been lead
gently enough into the topic of the weather? :
-- "What d'ya think of this weather?"
-- "Boy, it's something"
-- "I've never seen anything like it."
-- "You got that right."
-- "It's gonna do something."
-- "I don't like the looks of those clouds."
-- "I'd say it could do anything."
-- "A guy wants to keep his eye on weather like this."
-- "You bet."
All quotes are from "How To Talk Minnesotan" by Howard Mohr.
I hope you were able to return home to enjoy "a little lunch"!
~ Barb

REPLY
1 reply
Ray Kemble | @ray666 | Mar 27 10:20am
In reply to @bjk3 "@mikead63 ~ Maybe he hadn't time for his regular Lutefisk breakfast that day? Or, maybe he..." + (show)
@bjk3

@mikead63 ~
Maybe he hadn't time for his regular Lutefisk breakfast that day?
Or, maybe he hadn't been lead
gently enough into the topic of the weather? :
-- "What d'ya think of this weather?"
-- "Boy, it's something"
-- "I've never seen anything like it."
-- "You got that right."
-- "It's gonna do something."
-- "I don't like the looks of those clouds."
-- "I'd say it could do anything."
-- "A guy wants to keep his eye on weather like this."
-- "You bet."
All quotes are from "How To Talk Minnesotan" by Howard Mohr.
I hope you were able to return home to enjoy "a little lunch"!
~ Barb

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HA!!!!!! Love it! The next time one of my doctors wants to talk about my health, I'm going to "lead him gently" (as you say, Barb) by interrupting: "Health again? Aw, come on, Doc, can't we talk about something else?"

REPLY
serenafix | @serenafix | Mar 27 11:03am
In reply to @johnbishop "@antonintampfl2009 and @mikead63 To be honest, I've always thought of the neuropathy progression as a sliding..." + (show)
@johnbishop

@antonintampfl2009 and @mikead63 To be honest, I've always thought of the neuropathy progression as a sliding scale and not any specific stages - like bad, worse, and worst. None of the medical resources I've seen mention specific stages like 1, 2, 3, 4 but a search shows different medical facilities/clinics that treat neuropathy provide a list of stages. To me it still boils down to doing what you can to prevent the progression of the condition through whatever means works for you - supplements, diets, lifestyle, exercise, medications, therapies, etc..

Here's just one of many references on the stages - https://ethoshealthgroup.com/5-stages-of-neuropathy/.

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The staging scenario is scary when it gets to stage 5. Hopefully this takes a long time, I see people on here who have had neuropathy for over 10 years and most are still mobile and just living with it.

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