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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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 19, 2017
In reply to @amaze02 "I'm a type 2 diabetic , I get occasional pain in my legs. Trying to increase..." + (show)
@amaze02

I'm a type 2 diabetic , I get occasional pain in my legs. Trying to increase my knowledge, for treatment and slowing its progress.

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@amaze02, you may also be interested in following the discussions in the Diabetes group here: https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 19, 2017
In reply to @bloufitz "I was diagnosed with triigeminal neuropathy many years ago! Left side of my face. Mainly, I..." + (show)
@bloufitz

I was diagnosed with triigeminal neuropathy many years ago! Left side of my face. Mainly, I just live with it. Not much else I can do! Also, had Moh's micrographic surgery in 2000 close to the same area for basal cell skin cancer. Sometimes, I find I have a bit of a problem applying lipstick evenly.

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Welcome, Blouf.
We also have a group of members talking about trigeminal neuralgia here: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

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janetdh | @janetdh | Jul 19, 2017
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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I feel exactly the same. If all I can accomplish re: CRPS and related neuropathy is increasing awareness, it makes it a little easier to accept my journey. Thank you on the other side of the globe.

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janetdh | @janetdh | Jul 19, 2017
In reply to @suzylulu "Coleen and John, you are appreciated for your efforts in guiding and answering our questions." + (show)
@suzylulu

Coleen and John, you are appreciated for your efforts in guiding and answering our questions.

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John, so glad you & Colleen stsrted this group. Could you please check to see if I'm on the distribution list. Thanks much.

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wellness3070 | @wellness3070 | Jul 20, 2017

Anxious to discuss peripheral leg neuropathy and treatments.

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10 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 20, 2017
In reply to @suzylulu "Coleen and John, you are appreciated for your efforts in guiding and answering our questions." + (show)
@suzylulu

Coleen and John, you are appreciated for your efforts in guiding and answering our questions.

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Janet,
To ensure that the Neuropathy group messages are included in your daily digest (email summary from Connect), be sure to follow the group. Here's how:

1. Go to the Neuropathy group homepage https://connect.mayoclinic.org/group/neuropathy/
2. Click +Follow (below the description of the group).
3. Choose how you want to be notified (each message or only in the digest).
4. Click Update.
5. Close the pop-up.

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 20, 2017

Hello @wellness3070, can you share your diagnosis with other members or do you have some specific questions you would like to ask? This is a great group for responding to a members health questions that relate to their own health issues.

John

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georgiegirl | @georgiegirl | Jul 20, 2017

The concern I have is that evidently my neuropathy source is not known, according to neurological tests I have been given over the last 26 years. It is not peripheral but eminates from my lower back. I have constant electric zinging up and down my legs and feet with intermittent lightning bolt type jolts when I walk. At night the zinging is most prominent so it's sometimes difficult to go to sleep. I have used gabapentin over the years but it really does not help. I tried Lyrica but it made me loopy and off balance. Surgery has been suggested with the caveat that there is no guarantee of any real relief. I feel like I will have to live with it but am just looking to see if anyone has come up with ideas of ways they use to calm the electricity down. I would appreciate any thoughts. Thank you.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 20, 2017

Hello @georgiegirl, I'm sorry to hear about your struggles with the type of neuropathy you have. Have you or your doctors looked into a spinal cord stimulator? @jimhd do you have any more information or thoughts that might help?

John

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janetdh | @janetdh | Jul 20, 2017
In reply to @suzylulu "Coleen and John, you are appreciated for your efforts in guiding and answering our questions." + (show)
@suzylulu

Coleen and John, you are appreciated for your efforts in guiding and answering our questions.

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Done, thanks!

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