1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

marystefy | @marinelastef | Aug 13, 2018
In reply to @allisonsnow "@marinlastef I found the pain rehab clinic to be very helpful for the most part some..." + (show)
@allisonsnow

@marinlastef

I found the pain rehab clinic to be very helpful for the most part some did not apply to me but you will have that when you have a program for a group that can encompass so many causes for pain

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Allison, do they refer you to specialists in case they think you need to see one ? Personally I don’t take a lot of meds, but I do have severe neck and back pain from nerve blocks, I’m hoping they can come up with some solutions ‘cause the pain is more than I can handle.

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kruppm | @kruppm | Aug 13, 2018

I don't take any suplements...maybe i should

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kruppm | @kruppm | Aug 13, 2018

tried stem cel transplant...no luck

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3 replies
marystefy | @marinelastef | Aug 13, 2018
In reply to @kruppm "tried stem cel transplant...no luck" + (show)
@kruppm

tried stem cel transplant...no luck

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If you don’t mind can you disclose the clinic , to cross it from our list .

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kruppm | @kruppm | Aug 13, 2018
In reply to @kruppm "tried stem cel transplant...no luck" + (show)
@kruppm

tried stem cel transplant...no luck

Jump to this post

northwestern, chicago

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marystefy | @marinelastef | Aug 13, 2018
In reply to @kruppm "tried stem cel transplant...no luck" + (show)
@kruppm

tried stem cel transplant...no luck

Jump to this post

Did you see Dr Burt for the treatment ?
Or how did you make them treat you with it ? Did you have to pay from your own pocket ? Asking because I’m from Chicago as well .

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allisonsnow | @allisonsnow | Aug 13, 2018
In reply to @marinelastef "Hello @allisonsnow , thank you for answering. Can you be more specific regarding the program ?..." + (show)
@marinelastef

Hello @allisonsnow , thank you for answering. Can you be more specific regarding the program ? What do you mean by some did not apply to you ? I want to make sure that I’ll be prepared for this program . It’s my only hope . Thank you so much again !!

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@marinelastef ,
Don't worry !!! I met some incredible people there, patients and teachers/Dr.s, nurses etc. All I meant by that was that a lot of the physical therapy was aimed more for back and neck and at that time my back was not a problem (boy how times change) Overall was a very good experience. For me it was expensive I don't know how it is set up now but then? 30 days out patient = 30 days in hotel

I really hope it helps you out! No one deserves to be in pain all the time.

remember I was there several years ago but then...the did physical and occupational therapy, they had an exercise program, they dealt with mental issues tied to pain, breath control to learn to not focus on pain, they had the neatest computer game to learn this! group sessions (small groups) to learn from each other. I can't remember for sure but seems to me there was a work book to go thru and to reference when we got home.

Good Luck
Allison

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allisonsnow | @allisonsnow | Aug 13, 2018
In reply to @allisonsnow "@marinlastef I found the pain rehab clinic to be very helpful for the most part some..." + (show)
@allisonsnow

@marinlastef

I found the pain rehab clinic to be very helpful for the most part some did not apply to me but you will have that when you have a program for a group that can encompass so many causes for pain

Jump to this post

@marinelastef I am sure they would

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marystefy | @marinelastef | Aug 13, 2018
In reply to @marinelastef "Hello @allisonsnow , thank you for answering. Can you be more specific regarding the program ?..." + (show)
@marinelastef

Hello @allisonsnow , thank you for answering. Can you be more specific regarding the program ? What do you mean by some did not apply to you ? I want to make sure that I’ll be prepared for this program . It’s my only hope . Thank you so much again !!

Jump to this post

Thank you for being so detailed regarding my concerns, I can’t wait to see what they can do for me !! Good lock with your appointment as well .

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dwb111060 | @dwb111060 | Aug 15, 2018

Hi my name is don and i have toxic neuropathy.i am using a product called rebuilder 300. . Does anyone have experience with this

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