Living with Neuropathy - Welcome to the group

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?

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.

@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

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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

@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.

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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

Capture

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/

@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

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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/

@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/

@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/

@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.

@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.

Anxious to discuss peripheral leg neuropathy and treatments.

@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.

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

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.

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

@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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