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.

Mentor
John, Volunteer Mentor | @johnbishop | 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.

Jump to this post

@suzylulu, thank you for the kind words! I think one of the real benefits of Mayo Connect is that it brings patients together in a safe place so that they are able to share their story, learn what others are doing and ask questions they may have. I found Connect in March of 2016 while searching for help and local support groups for my peripheral neuropathy. I'm so glad I did too.

Thanks again - keep sharing and asking questions - life is a learning journey! Psst...my motto is to learn at least one new thing a day. Sadly that one new thing is sometimes something I had learned in the past. That's a great thing about being 74...senior discounts and no one expects you to remember everything!

John

REPLY
1 reply
kevinking kking | @kevinking | Jul 19, 2017

Glad to see this group. I have idiopathic sensorimotor axonal polyneuropathy, which means, in my case, that both my legs are weak and sometimes my feet hurt, but there is no known cause of the neuropathy and no known cure.
Sometimes I experience the most foot pain lying in bed. I have been offered gabapentin, but in my experience that drug was not helpful.
I also understand that alcohol may exacerbate neuropathy, so I stoped all alcohol intake; however, I haven't seen any improvement yet.
I had a laminectomy at L4-L5. That had the possibility of easing the neuropathy, but it didn't.
What's next? Don't know.
Kevin

REPLY
7 replies
ujeeniack | @ujeeniack | Jul 19, 2017
In reply to @kevinking "Glad to see this group. I have idiopathic sensorimotor axonal polyneuropathy, which means, in my case,..." + (show)
@kevinking

Glad to see this group. I have idiopathic sensorimotor axonal polyneuropathy, which means, in my case, that both my legs are weak and sometimes my feet hurt, but there is no known cause of the neuropathy and no known cure.
Sometimes I experience the most foot pain lying in bed. I have been offered gabapentin, but in my experience that drug was not helpful.
I also understand that alcohol may exacerbate neuropathy, so I stoped all alcohol intake; however, I haven't seen any improvement yet.
I had a laminectomy at L4-L5. That had the possibility of easing the neuropathy, but it didn't.
What's next? Don't know.
Kevin

Jump to this post

Have U consulted your neurologist?

I still use gabapentin, 300 m g, AM and PM. Others Use Lyrica.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jul 19, 2017
In reply to @pkindron "I never heard of a laminectomy -?" + (show)
@pkindron

I never heard of a laminectomy -?

Jump to this post

That makes 2 of us that didn't know what a laminectomy is...here's a good overview:
http://www.mayoclinic.org/tests-procedures/laminectomy/basics/definition/prc-20009521
John

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2 replies
Lynsorensen | @lynsorensen | Jul 19, 2017

Please add me to this group and let me know how to keep in touch. I am moving to Phoenix, AZ for treatment at Mayo Clinic starting in August.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 19, 2017
In reply to @kevinking "Glad to see this group. I have idiopathic sensorimotor axonal polyneuropathy, which means, in my case,..." + (show)
@kevinking

Glad to see this group. I have idiopathic sensorimotor axonal polyneuropathy, which means, in my case, that both my legs are weak and sometimes my feet hurt, but there is no known cause of the neuropathy and no known cure.
Sometimes I experience the most foot pain lying in bed. I have been offered gabapentin, but in my experience that drug was not helpful.
I also understand that alcohol may exacerbate neuropathy, so I stoped all alcohol intake; however, I haven't seen any improvement yet.
I had a laminectomy at L4-L5. That had the possibility of easing the neuropathy, but it didn't.
What's next? Don't know.
Kevin

Jump to this post

Hi Kevin, I wasn't exactly sure what the diagnosis was not able to find much specific information on the Mayo Clinic website. I did a search using Google Scholar (https://scholar.google.com) with your specific diagnosis and it came up with a lot of information. Not sure if it's helpful but you may want to look through the links and see if any of the titles jump out at you:
https://scholar.google.com/scholar?hl=en&q=+idiopathic+sensorimotor+axonal+polyneuropathy+treatment&btnG=&as_sdt=1%2C24&as_sdtp=
Hope this helps...

John

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 19, 2017
In reply to @lynsorensen "Please add me to this group and let me know how to keep in touch. I..." + (show)
@lynsorensen

Please add me to this group and let me know how to keep in touch. I am moving to Phoenix, AZ for treatment at Mayo Clinic starting in August.

Jump to this post

Hello @lynsorensen, welcome to Mayo Connect. If you want to receive emails for this group, just go to the top of the discussion and click on the plus sign that says Follow. I attached a screenshot below. (sorry for scribbling! I have shaky hands...☺)

John
REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 19, 2017

I add my welcome to the new and familiar members, and am excited about having this group dedicated to neuropathy. For those of you who are new to Connect, you may be interested in reading through this discussion where many have shared great tips and thoughts. Join in.

Anyone here dealing with peripheral neuropathy? https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 19, 2017
In reply to @kevinking "Glad to see this group. I have idiopathic sensorimotor axonal polyneuropathy, which means, in my case,..." + (show)
@kevinking

Glad to see this group. I have idiopathic sensorimotor axonal polyneuropathy, which means, in my case, that both my legs are weak and sometimes my feet hurt, but there is no known cause of the neuropathy and no known cure.
Sometimes I experience the most foot pain lying in bed. I have been offered gabapentin, but in my experience that drug was not helpful.
I also understand that alcohol may exacerbate neuropathy, so I stoped all alcohol intake; however, I haven't seen any improvement yet.
I had a laminectomy at L4-L5. That had the possibility of easing the neuropathy, but it didn't.
What's next? Don't know.
Kevin

Jump to this post

You can also read other members' experience with laminectomy and ask questions here on Connect:
- Laminectomy and L4-L5-S1 fusion https://connect.mayoclinic.org/discussion/laminectomy-and-l4-l5-s1-fusion/

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