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.

@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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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 mentions stage 4 of Neuropathy. I heard somewhere of the stages of Neuropathy. Can someone explain or enumerate these stages and the symptoms of each? In a conversation with a Neurologist I point blank asked him if this illness would kill me. He answered that probably not, but that it would make my life miserable. The stages alluded to, appear to indicate otherwise? Any one can explain.

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I too prefer to be positive. I do not take anything for any of my neuropathy symptoms. I prefer to be aware of them. I exercise regularly, wear shoes that help my feet feel "connected" to the ground, and I always always always compare my situation with another's issue that is worse. I consider myself fortunate that I can still walk with a walker, drive my car safely and experience life with a grateful and positive attitude. Good luck to you, Mike!

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@antonintampfl2009

Mikead63 mentions stage 4 of Neuropathy. I heard somewhere of the stages of Neuropathy. Can someone explain or enumerate these stages and the symptoms of each? In a conversation with a Neurologist I point blank asked him if this illness would kill me. He answered that probably not, but that it would make my life miserable. The stages alluded to, appear to indicate otherwise? Any one can explain.

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@antonintampfl2009 - I am not familiar with "stages of neuropathy.

I'll pass this on to John Bishop our fantastic Volunteer Mentor @johnbishop
John?

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@formerrunner13

I too prefer to be positive. I do not take anything for any of my neuropathy symptoms. I prefer to be aware of them. I exercise regularly, wear shoes that help my feet feel "connected" to the ground, and I always always always compare my situation with another's issue that is worse. I consider myself fortunate that I can still walk with a walker, drive my car safely and experience life with a grateful and positive attitude. Good luck to you, Mike!

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Great attitude @formerrunner13 ! I'm like you (most of the time!) when I feel crappy and start feeling sorry for myself I think of others with more serious issues than me. I then thank the Lord for the life I have and get back on with life!

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@antonintampfl2009

Mikead63 mentions stage 4 of Neuropathy. I heard somewhere of the stages of Neuropathy. Can someone explain or enumerate these stages and the symptoms of each? In a conversation with a Neurologist I point blank asked him if this illness would kill me. He answered that probably not, but that it would make my life miserable. The stages alluded to, appear to indicate otherwise? Any one can explain.

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@antonintampfl2009
Some doctors use the 4 stage while others use the 5 stage system.
My doc uses the 5 stage and says I'm at stage 4.

STAGE 4 SYSTEM

Stage 1:
Early Symptoms
Intermittent tingling, numbness, or burning sensations, typically in the feet or hands
Mild weakness or clumsiness
May not be noticeable or significant enough to seek medical attention

Stage 2:
Moderate Damage
Symptoms become more persistent and severe
Pain may be constant or intermittent, and can range from burning to shooting
Increased weakness and loss of coordination
Difficulty with balance and walking

Stage 3:
Severe Damage
Intense pain that can be debilitating
Significant weakness and muscle atrophy
Loss of sensation, making it difficult to feel temperature or pain
Problems with bowel and bladder function

Stage 4:
Advanced Damage Extreme weakness and paralysis, Complete loss of sensation, Foot deformities and ulcers, and Risk of amputation.

5 STAGE SYSTEM

Stage 1:
Mild, sporadic symptoms like burning, tingling, and numbness.

Stage 2:
Symptoms become more frequent and intense.

Stage 3:
Symptoms are constant, with pain peaking and impacting daily life.

Stage 4:
Pain subsides, but numbness and weakness increase, affecting walking and balance.

Stage 5:
Nerves are severely damaged, with little to no feeling, and potential complications like difficulty walking or needing a wheelchair.

Hope this helps.
Take care,
Jake

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@ray666

Hi, Mike

I took me a while before I realized that my doctors' seemingly blasé attitude wasn't because they didn't care about my condition but instead because they'd nothing promising to tell me, and that was as frustrating to them as it was to me. I, too, continue to look up stuff, sit in on the occasional webinar, but basically I'm done playing the PN grad student. My focus is now 90% on keeping my bod in motion … which is perfect segue to:

@centre paraphrased Claudius in Hamlet, saying so appropriately, "When aches come, they come not in single aches but in battalions." This morning, I'm thinking (and chuckling) "How true, how true!" I have a call in to my orthopedic doc, asking to see him. Along with my PN balance issues and my post-sepsis shortness of breath, as of yesterday I'm having a tough time putting my full body weight on my left leg. Is that the newest battalion to be threatening my castle keep: a hip replacement? 🙂 It never does end, does it? (Until it does … but that's another topic.)

There was a time, too, Mike, when I would end my day with a tumbler of Johnny Walker Black. No longer, though. Much to my chagrin, I had to set down my JWB. I now end my days with a non-alky beer (oh, sigh). We do watch a little TV, though.

Lately, we've been binging on British murder mysteries. I used to wonder why we'd become so fond of them, but then the other day I read that these fictional murder mysteries serve as a relaxing break from the monstrous stuff facing us in our daytime lives. At least, in a fictional murder mystery, things get solved. You begin with a body, you follow the detectives through endlessly complicating complications, and, in the end (an hour later, maybe an hour-and-a-half), some grizzled culprit is handcuffed and perp-walked off to jail. After a long, hard day of slogging through reality, what could be more satisfying? 🙂

Life IS good, Mike! Take care!
Ray

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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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@mikead63

@antonintampfl2009 - I am not familiar with "stages of neuropathy.

I'll pass this on to John Bishop our fantastic Volunteer Mentor @johnbishop
John?

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@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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@ray666

Hi, Mike

I took me a while before I realized that my doctors' seemingly blasé attitude wasn't because they didn't care about my condition but instead because they'd nothing promising to tell me, and that was as frustrating to them as it was to me. I, too, continue to look up stuff, sit in on the occasional webinar, but basically I'm done playing the PN grad student. My focus is now 90% on keeping my bod in motion … which is perfect segue to:

@centre paraphrased Claudius in Hamlet, saying so appropriately, "When aches come, they come not in single aches but in battalions." This morning, I'm thinking (and chuckling) "How true, how true!" I have a call in to my orthopedic doc, asking to see him. Along with my PN balance issues and my post-sepsis shortness of breath, as of yesterday I'm having a tough time putting my full body weight on my left leg. Is that the newest battalion to be threatening my castle keep: a hip replacement? 🙂 It never does end, does it? (Until it does … but that's another topic.)

There was a time, too, Mike, when I would end my day with a tumbler of Johnny Walker Black. No longer, though. Much to my chagrin, I had to set down my JWB. I now end my days with a non-alky beer (oh, sigh). We do watch a little TV, though.

Lately, we've been binging on British murder mysteries. I used to wonder why we'd become so fond of them, but then the other day I read that these fictional murder mysteries serve as a relaxing break from the monstrous stuff facing us in our daytime lives. At least, in a fictional murder mystery, things get solved. You begin with a body, you follow the detectives through endlessly complicating complications, and, in the end (an hour later, maybe an hour-and-a-half), some grizzled culprit is handcuffed and perp-walked off to jail. After a long, hard day of slogging through reality, what could be more satisfying? 🙂

Life IS good, Mike! Take care!
Ray

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You guys are so funny!

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@amkie

You guys are so funny!

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Humor sometimes heals!! Enjoy your day with a laugh or 2!

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