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.

marksmom | @marksmom | Jul 2, 2022
In reply to @johnbishop "Hi @rocketdad, Welcome to Connect. Sorry to hear that you have been dealing with neuropathy and..." + (show)
@johnbishop

Hi @rocketdad, Welcome to Connect. Sorry to hear that you have been dealing with neuropathy and other related issues for 40 years with not much relief. There is a lot of information out there but you really have to do your research and find reliable sources. Here are a couple in case you haven't seen them.

-- Neuropathy Commons: https://neuropathycommons.org/index.php/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/

Are you able to share a little more about your diagnosis and the symptoms that are most bothersome?

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Thank you for your hug!💕🌷

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wifemom3 | @wifemom3 | Jul 4, 2022

Hi everyone.
Introduction: my name is Michele. I have stage 4b colon cancer. I am currently doing chemo treatments. I am at my 11th round.
I struggle with neuropathy. It is the worst. I know it is due to the chemo treatment that I receive. My care team recently switched my medication to Duloxetine. It seems to help. I still get random pins and needles in my hands and feet but not as much as before. In a few weeks I am looking to add Gabaplatin to my medicine list.
My husband picked up some nerve cream from walmart that seems to also work. I think with the correct mix of regiments, maybe we can find a solution to this.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 4, 2022
In reply to @wifemom3 "Hi everyone. Introduction: my name is Michele. I have stage 4b colon cancer. I am currently..." + (show)
@wifemom3

Hi everyone.
Introduction: my name is Michele. I have stage 4b colon cancer. I am currently doing chemo treatments. I am at my 11th round.
I struggle with neuropathy. It is the worst. I know it is due to the chemo treatment that I receive. My care team recently switched my medication to Duloxetine. It seems to help. I still get random pins and needles in my hands and feet but not as much as before. In a few weeks I am looking to add Gabaplatin to my medicine list.
My husband picked up some nerve cream from walmart that seems to also work. I think with the correct mix of regiments, maybe we can find a solution to this.

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Hi @wifemom3, Have you seen this webinar?

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1 reply
wifemom3 | @wifemom3 | Jul 5, 2022
In reply to @johnbishop "Hi @wifemom3, Have you seen this webinar? https://youtu.be/eNkDf9ezXFo" + (show)
@johnbishop

Hi @wifemom3, Have you seen this webinar?

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This video was very helpful. Thank you

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feedsbirds | @feedsbirds | Jul 5, 2022

Hi Im Beth from Montana. I have neuropathy in my lower legs, now increasing in lower left leg—is this related to recent concussions? Left hip pain? Possible spinal involvement? Thanks!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 5, 2022
In reply to @feedsbirds "Hi Im Beth from Montana. I have neuropathy in my lower legs, now increasing in lower..." + (show)
@feedsbirds

Hi Im Beth from Montana. I have neuropathy in my lower legs, now increasing in lower left leg—is this related to recent concussions? Left hip pain? Possible spinal involvement? Thanks!

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Hi Beth @feedsbirds, Welcome to Connect. There are many causes for neuropathy and it is possibly related to an nerve compression caused by an injury or involving the spine. Only a doctor or neurologist can make the diagnosis. A couple of the best sources for learning more are these sites:

-- Neuropathy Commons: https://neuropathycommons.org/index.php/neuropathy/causes-neuropathy
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/causes/

Have you seen a neurologist or a doctor for your symptoms?

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pamelaz | @pamelaz | Jul 19, 2022
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

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I’m taking gabapentin and Dulextione and Quetiapine. So far I can sleep but I walk really funny.

I, also, have GERD and optic nerve damage.

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lindapl | @lindapl | Jul 23, 2022

Hi. I am lindapl and cannot find my post in this group. Think it was moved. Can u help

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 24, 2022
In reply to @lindapl "Hi. I am lindapl and cannot find my post in this group. Think it was moved...." + (show)
@lindapl

Hi. I am lindapl and cannot find my post in this group. Think it was moved. Can u help

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Hi Linda, I'm not sure if you saw the email notification reply to your first post. Your post was moved to the following discussion so that you can meet with other members with similar experience. You should have seen this reply email notification from @colleenyoung with the details -- https://connect.mayoclinic.org/comment/729271/.

-- Trigeminal Neuralgia dental implants: https://connect.mayoclinic.org/comment/729180/

It's easy to find previous posts that you have made. Just click on your member name @lindapl which will take you to your profile page. Then click Comments at the left. You will see all of your previous posts with the latest one at the top.

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pamelaz | @pamelaz | Jul 24, 2022

Hi. I’m pamelaz. I have horrible neuropathy and would love any suggestions. The pain is unbearable.

I’m on 60 mgs of Cymbalta and 100 mgs of Gabapentin throughout the day. I’m having involuntarily jerking and walking wobbly.

I Also have GERD and epilepsy. Take 1000 mgs of Keppra and 1 mg of clonazepam 2 times a day. Everything seems worse. Will it get better?

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