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.

Hank | @jesfactsmon | Sep 4, 2020
In reply to @whenley1968 "I am sorry I don't understand. Was I not supposed to share this in the forum?" + (show)
@whenley1968

I am sorry I don't understand. Was I not supposed to share this in the forum?

Jump to this post

Hi @whenley1968 I just want to be clear that you understand that you are not doing anything wrong at all in any way shape or form. You are welcome here, there and everywhere on Connect. John's interest is definitely just to make sure you are aware of discussions that are most related to your particular condition(s). Just so you know, I am pretty much completely healthy and I just graze around Connect on behalf of my wife. So feel free to hang out anywhere on Connect, it is an amazing place to learn and post! Best, Hank

REPLY
fiesty76 | @fiesty76 | Sep 4, 2020

@grandmalele, I so agree with what @rwinney wrote. Your story is amazing. What you shared from your neurologist about the good news, bad news and other bad news sounded almost word for word the same as what my neurologist told me. Gulp!

So glad your walker has offered you more stability and mobility. A friend recently purchased one advertised on tv that is adjustable and can raise so that a person can see straight ahead and not have to bend over which can add to back pain. Can't remember the name of the walker but she suffers with severe chronic back pain and recently had hip replacement surgery. She said that the new walker was like X-mas twice over after her other walkers. I'm not sure whether this one provides a seat but would be happy to get the name and address for the adjustable walker if you care to respond? No problem either way.
My neighbor across the street uses a walker with a seat and will often sit and chat a few minutes when we both are at our mailboxes at the same time.

Portrait painting must require additional artistic skill. I can't draw with a ruler but would love seeing a portrait you've done so if you can or care to, post away. If not, I'll look forward to reading more of your posts here. As a pianist and former music teacher, music is a great love but I'm putting in requests for painting and singing talents for the next life! Never hurts to ask ahead, right? Smiles and welcome. P.S. I just reread your paragraph on your rollator walker and that may be like my friend is using.

REPLY
sunnyflower | @sunnyflower | Sep 4, 2020

Hello grandmalele and welcome to the blog! I hope you receive as much caring support and helpful information as I have since I became active in the blog not too long ago.

Your blog was very interesting and informative. My heart really goes out to you for everything you have been through and are going through.

I hope and pray things get much better for you and that you have some good support in your life. I pray you may experience the peace and comfort of God and I wish you many blessings, Sunny flower. 😊

REPLY
sunnyflower | @sunnyflower | Sep 5, 2020
In reply to @lorirenee1 "@sunnyflower @jesfactsmon @jimhd Hi guys, Sunny, I literally have to reread everything you wrote to me..." + (show)
@lorirenee1

@sunnyflower @jesfactsmon @jimhd Hi guys, Sunny, I literally have to reread everything you wrote to me here about Christ. I need to learn from you, but yes, maybe it is not right that we are posting in the Neuropathy section. Maybe, private messages? I am not really even sure what I would say. I literally got goose bumps when I read that you are Jewish!!! You never know the roads that you will travel in this life!!!! When Jesus came personally to me, it was like a father or mother examining and enjoying their child. Are you a parent? I know that Hank is not, and I have wondered much about this, but it is personal? But Sunny, if you are a parent, do you remember the joy of just studying your child? Just looking, examining, feeling this deep love that only a child could bring you? That is the love Jesus felt. I know it. He just came, and loved me deeply. He examined me, watched over me, and had a need to see me up front and personal. I was blessed. I am a Jew, through and through, and really do not care to convert. But I know Jesus loves his people, purely. Hank and Sunny, I will read Sunny's post about Jesus again. It is so scholarly, and I am sleepy and in pain. But is will read again. These postings have blown me away. Love to you guys, Lori

Jump to this post

Hi Lori Renee, I lost this message, but FINALLY found it! Whew! I will respond. I am honored you shared yourself with me and want to devote the time and answer you deserve. Thank you for your patience with me! My week has been unbelievable and I am hoping to answer very soon.

I don't know if it's possible to copy and paste your message into a private message but if so, would you mind trying? I thought of doing it but am not sure how.

Hope it is a tolerable day, Sunnyflower. 💗😊

REPLY
bustrbrwn22 | @bustrbrwn22 | Sep 5, 2020

Would my severe sciatica be considered a neuropathy?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 5, 2020
In reply to @bustrbrwn22 "Would my severe sciatica be considered a neuropathy?" + (show)
@bustrbrwn22

Would my severe sciatica be considered a neuropathy?

Jump to this post

@bustrbrwn22 that might be an excellent question for your doctor. This article may provide an explanation for you.

A Guide to Sciatica Treatment for Patients: https://www.painscience.com/articles/sciatica.php

REPLY
1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 5, 2020
In reply to @johnbishop "@bustrbrwn22 that might be an excellent question for your doctor. This article may provide an explanation..." + (show)
@johnbishop

@bustrbrwn22 that might be an excellent question for your doctor. This article may provide an explanation for you.

A Guide to Sciatica Treatment for Patients: https://www.painscience.com/articles/sciatica.php

Jump to this post

Awesome. Thanks. I am sending to my myofascial therapist

REPLY
bustrbrwn22 | @bustrbrwn22 | Sep 14, 2020
In reply to @lorirenee1 "Hi all, My journey to neuropathy was a short one. Found I had stage 1 Breast..." + (show)
@lorirenee1

Hi all, My journey to neuropathy was a short one. Found I had stage 1 Breast Cancer, and had a successful lumpectomy. Had radiation into the tumor right at the time of the lumpectomy, but never had chemo. About 4 weeks after surgery, as I was beginning to feel better from the surgery itself, my toes started overlapping, and I bought toe spacers. The overlapping lead to pain, and it just never left, and got much worse with time. Wound up at 2 neurologists, and both said I probably had an autoimmune response to the breast tumor, but blood work did not show that. However, neurologist said the test is inconclusive. When I did my nerve conduction test, the guy who did it said that he has had many patients who have only had radiation, that got neuropathy. My breast surgeon said she has never had anyone get neuropathy after surgery. There is a you tube video from Mayo that says when a person gets neuropathy within a month of surgery, it is from something to do with the surgery. At this point, I don't even care what it is from. I have not had a day without pain since my breast surgery recovery. I do not even think about breast cancer, because my mind is so occupied with pain. And there you have it.....My tale. Lori Renee

Jump to this post

Lori. The doc’s response just makes me angry

REPLY
testudo | @testudo | Sep 15, 2020

Jim, John are you guys still driving a car?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 15, 2020
In reply to @testudo "Jim, John are you guys still driving a car?" + (show)
@testudo

Jim, John are you guys still driving a car?

Jump to this post

@testudo - Yes, I am still driving. Leaving for a sleep medicine appointment in Rochester, MN in a few minutes. I'm pretty sure Jim @jimhd is also still driving. I believe there are a few members who use hand controls for driving a car.

REPLY
View MoreView Less
Please sign in or register to post a reply.