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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.

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toddly | @toddly | 6 hours ago

First timer here. I have been diagnosed with aoxnal polyneuropathy and chronic left S1 radiculopathy. Balance is very bad, fall weekly and severe pain in my hips and glutes. Cold feet, no diabetes. Feet somewhat numb. Looking for a magic pill or remedy. I have a prescription for Gabapentin but take only one tablet at night. Don’t like how it makes my head feel and don’t know the long term side affects. Also have T-9 to S-1 fused in January 24 and redone in December 24 because a rod pulled out. Trying to lose some weight and that is helping some.

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Mentor
John, Volunteer Mentor | @johnbishop | 5 hours ago
In reply to @toddly "First timer here. I have been diagnosed with aoxnal polyneuropathy and chronic left S1 radiculopathy. Balance..." + (show)
Profile picture for toddly @toddly

First timer here. I have been diagnosed with aoxnal polyneuropathy and chronic left S1 radiculopathy. Balance is very bad, fall weekly and severe pain in my hips and glutes. Cold feet, no diabetes. Feet somewhat numb. Looking for a magic pill or remedy. I have a prescription for Gabapentin but take only one tablet at night. Don’t like how it makes my head feel and don’t know the long term side affects. Also have T-9 to S-1 fused in January 24 and redone in December 24 because a rod pulled out. Trying to lose some weight and that is helping some.

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Welcome @toddly, You are not alone looking for a magic pill or remedy. I think we've all been there. I have idiopathic small fiber PN but no pain, only numbness and some tingling. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. You might find this related discussion helpful for connect with other members who share your diagnosis.
-- Axonal peripheral neuropathy: Finally, a diagnosis!
https://connect.mayoclinic.org/discussion/axonal-peripheral-neuropathy-finally-a-diagnosis/
Although there are no magic pills, there are a lot of things we can do to improve our life when living with neuropathy. Here's some information on treatments from the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/treatments/.

Losing weight was one thing that definitely helped me in the beginning of my journey searching for something that helps. Have you looked into any balance exercises or therapy to help with the balance issues that are part of our neuropathy journey?

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