1. < Neuropathy
Mentor

Member Neuropathy Journey Stories: What's Yours?

Posted by John, Volunteer Mentor @johnbishop, May 12, 2020

This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.

— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?

Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?

What's your neuropathy story?

Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.

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

ess77 - Elizabeth | @ess77 | Apr 29, 2021
In reply to @johnbishop "I like sitting in a zero gravity type chair to take the pressure off of my..." + (show)
@johnbishop

I like sitting in a zero gravity type chair to take the pressure off of my back but that may or may not be the same for everyone. I think you have to try a chair out to see if it feels OK and would help you. Here's an article but there are many types and prices for these types of chairs - https://ergonomictrends.com/best-zero-gravity-chairs-back-pain/

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John, I've wanted to try one of these chairs since they came out several years ago. Think I will.....would have loved sitting in one with a big iced tea and a really good cigar! My fiance and I used to enjoy a good cigar several evenings a week, me with my iced tea or diet coke. him with his bourbon. I miss those nice, peaceful evenings, overlooking or beside the pool. Surrounded by lovely woods, birds, owl, lots of snakes, creek and peace. I'm going to ck it out, the Timberlake looks excellent and I'm aware of the company. Thanks, John. Bless you , my friend.
elizabeth

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silverapple | @silverapple | Apr 29, 2021
In reply to @avmcbellar "Thanks @silverapple, I currently live in Florida. I had never listened to the Epitaph of Seikilos..." + (show)
@avmcbellar

Thanks @silverapple, I currently live in Florida. I had never listened to the Epitaph of Seikilos before. It certainly is different from the modern day Greek music, of course depending on the region. Very nice you are learning the language. I applaud you. It is not an easy language. A good avenue for focusing on other things to remain positive. I always use language to help others by interpreting. It has always been useful to residents in the past, especially in communities with a large greek population. I enjoy listening to music as well. It is a great motivator!

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@avmcbellar Do you speak the language? I try on FB but my hands...

I use Rosseta Stone and a book "Learn Greek Alone" With Rosetta I am in the 2nd Lesson of Get Started but I am practicing Cases and art + sustantives declination, also Present of Indicative.

When harp was not possible only Greek fill the hole. It is a language full of history and culture. I am passionate with it.

Good evening.

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Barry Sheales | @user_che214927 | Apr 30, 2021
In reply to @avmcbellar "Hi @silverapple I agree, being angry does not help each individual with their health situation. Sorry..." + (show)
@avmcbellar

Hi @silverapple I agree, being angry does not help each individual with their health situation. Sorry to hear about your difficult health struggles. We do have to learn our new way of life and be thankful for our prior experiences. The journey can be lonely because everyone may have a different pain location and a different pain threshold. By learning and not being biased we gain the knowledge to make educational decisions for ourselves and perhaps be less dependent. Many times there are no answers by medical professionals. I do the next best thing and that is to learn by trial and error. After all, it is me that deals with my medical issues day by day and not the medical professionals. I have learned on my own to combat health issues when the medical professionals had no clue. I have come a long way and feel much better. I do not take any medications. I do have a high pain tolerance. I wasn’t going to sit back and be angry. Instead, I used my knowledge to help myself. I believe being optimistic is very helpful. Interesting you chose to learn Greek. May I ask your motivation for learning the basic Greek language? The dialect can be different depending on the region. Take care of yourself. I wish you well to continue with a positive attitude. Toni

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Hi Tony, I virtually agree with the your experiences of Medical Practitioners. I am now aged 90 and practicing Neuroplasticity, and am improving. I am also on nil medication. Go into my previous post for details and actual actions I have taken. Best wishes. I am also very optimistic, which is totally necessary for neuroplasticity.

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avmcbellar | @avmcbellar | May 4, 2021

Hi Barry @user_che214927 glad to hear you are getting closer to a medical relief. I believe the mind can be responsible for many good outcomes as long as there is optimism and commitment. I have found walking daily on grass in my backyard full of inclines and declines has improved my walking. I have come a long way. At first I used a 2 wheeled walker. I progressed to a sitting walker and now walking has become a breeze with my quad cane. On level surfaces I don’t use the cane at all. I know the brain can constantly learn no matter the age. I am excited for you. Are you able to walk longer distances now? Do you still practice exercises every day using alternate limbs with your day to day activities of daily living? Let us know how you are doing! Toni

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1 reply
Barry Sheales | @user_che214927 | May 4, 2021
In reply to @avmcbellar "Hi Barry @user_che214927 glad to hear you are getting closer to a medical relief. I believe..." + (show)
@avmcbellar

Hi Barry @user_che214927 glad to hear you are getting closer to a medical relief. I believe the mind can be responsible for many good outcomes as long as there is optimism and commitment. I have found walking daily on grass in my backyard full of inclines and declines has improved my walking. I have come a long way. At first I used a 2 wheeled walker. I progressed to a sitting walker and now walking has become a breeze with my quad cane. On level surfaces I don’t use the cane at all. I know the brain can constantly learn no matter the age. I am excited for you. Are you able to walk longer distances now? Do you still practice exercises every day using alternate limbs with your day to day activities of daily living? Let us know how you are doing! Toni

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Hi Tony, the official diagnosis, by two specialist neurologists is that I have Peripheral-neuropathy, and based on the huge number of tests taken, I still have a life expendency of over 100 year They also agreed that, practising Neuroplasticity, that a cure is possible BUT, it will be
tough going to achieve. Whilst I still work hard on my exercise program, it is good to be fit , but nothing to dò with neuroplasticity. We both have a braiin problem, not a muscle problem. The aim is to rewire our brain , making it alter.Our brain map is virtually drawn from previous actions, experiences, beliefs etc., it is automatic.By changing all or most of them, means drawing a new brain map. A good example is asking a person to put their watch on their other wrist, and the note how long it takes to stop looking at a bare wrist. Many can't or won't do it, once the brain has rewired that part of the brain map, we wil, automatically look at the new location..I suggest you study, not just read both of Doidge's books, shown in my previous posts. Best wishes for now!
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Ray Kemble | @ray666 | May 7, 2021

It appears this topic has been left untouched for quite some time. It seems an excellent topic, especially for someone like me who has had his first visit to a neurologist only this past Monday. Although I've yet to receive a clear-cut diagnosis, I would welcome hearing from others what their early "suspicions" were, suspicions that eventually led to a peripheral neuropathy diagnosis.

For me, long before I even heard of PN (ten years ago?), I noticed that myusual good balance was going wonkers, especially at low-light times of day (dawn, twilight). I hadn't had any falls, or at least none that I thought might have been the onset of a Big Problem. Doctors, of course, always ask if you've balance concerns. If I answered 'yes,' the response was ordinarily along the lines of 'Ah, vertigo!' or "Dizziness, I see.' I'h have to protest: 'No, no, I've never felt dizzy. The room was never going round and round.' I found it maddening to come up with the right words to describe the sensation. Eventually, I did––or I came as close as I probably ever will: 'It feels like I'm walking on a ship's deck in a rolling sea––not a storm-tossed sea, just a rolling sea–––and I have a tough time walking a straight line.'

Over the years, I've seen many physical therapists. Even though they'd nod when I'd use mu rolling sea analogy. I'm convinced they thought 'Ah, vertigo!––or (sigh!) old age. (I'm 76.) It's been a long haul, leading up to my finally seeing a neurologist. Although I've yet to receive a diagnosis of PN, I know that's what she suspects. If it turns out all I have is old age (no surprise there), I'll be a happy camper. If it is PN … well, that's why I joined this forum.

Wishing you all well!
Ray

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 7, 2021
In reply to @ray666 "It appears this topic has been left untouched for quite some time. It seems an excellent..." + (show)
@ray666

It appears this topic has been left untouched for quite some time. It seems an excellent topic, especially for someone like me who has had his first visit to a neurologist only this past Monday. Although I've yet to receive a clear-cut diagnosis, I would welcome hearing from others what their early "suspicions" were, suspicions that eventually led to a peripheral neuropathy diagnosis.

For me, long before I even heard of PN (ten years ago?), I noticed that myusual good balance was going wonkers, especially at low-light times of day (dawn, twilight). I hadn't had any falls, or at least none that I thought might have been the onset of a Big Problem. Doctors, of course, always ask if you've balance concerns. If I answered 'yes,' the response was ordinarily along the lines of 'Ah, vertigo!' or "Dizziness, I see.' I'h have to protest: 'No, no, I've never felt dizzy. The room was never going round and round.' I found it maddening to come up with the right words to describe the sensation. Eventually, I did––or I came as close as I probably ever will: 'It feels like I'm walking on a ship's deck in a rolling sea––not a storm-tossed sea, just a rolling sea–––and I have a tough time walking a straight line.'

Over the years, I've seen many physical therapists. Even though they'd nod when I'd use mu rolling sea analogy. I'm convinced they thought 'Ah, vertigo!––or (sigh!) old age. (I'm 76.) It's been a long haul, leading up to my finally seeing a neurologist. Although I've yet to receive a diagnosis of PN, I know that's what she suspects. If it turns out all I have is old age (no surprise there), I'll be a happy camper. If it is PN … well, that's why I joined this forum.

Wishing you all well!
Ray

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At one of our meetings for the Minnesota Neuropathy Association before it disbanded we had a guest speaker - an 80+ year old neurologist from the University of Minnesota - 2 comments he made that got my attention were if you live long enough everyone gets neuropathy and the second one was how the term idiopathic came about for diagnosing neuropathy - from the idiot neurologist who diagnosed it. 😁

Notes from the 2018 meeting

Shared files

16Sep17_MN-Neuropathy-Assoc-20yr (16Sep17_MN-Neuropathy-Assoc-20yr.pdf)

REPLY
2 replies
Ray Kemble | @ray666 | May 7, 2021
In reply to @johnbishop "At one of our meetings for the Minnesota Neuropathy Association before it disbanded we had a..." + (show)
@johnbishop

At one of our meetings for the Minnesota Neuropathy Association before it disbanded we had a guest speaker - an 80+ year old neurologist from the University of Minnesota - 2 comments he made that got my attention were if you live long enough everyone gets neuropathy and the second one was how the term idiopathic came about for diagnosing neuropathy - from the idiot neurologist who diagnosed it. 😁

Notes from the 2018 meeting

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Ha! Thanks, @johnbishop, that brightened an otherwise gloomy Denver day. ––Ray

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | May 7, 2021
In reply to @johnbishop "At one of our meetings for the Minnesota Neuropathy Association before it disbanded we had a..." + (show)
@johnbishop

At one of our meetings for the Minnesota Neuropathy Association before it disbanded we had a guest speaker - an 80+ year old neurologist from the University of Minnesota - 2 comments he made that got my attention were if you live long enough everyone gets neuropathy and the second one was how the term idiopathic came about for diagnosing neuropathy - from the idiot neurologist who diagnosed it. 😁

Notes from the 2018 meeting

Jump to this post

Thanks for the memory reminder, John. That was my first meeting and my first chance to spend some time with you and Lavon.

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