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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.

Leonard | @jakedduck1 | 19 hours ago

@matk
I'm sorry to hear that you have neuropathy.
If I were you, I wouldn't fear what may or may not happen in the future. 99% of the things you worry about never happen and the other one percent is going to happen regardless so what's the point in worrying about it.
I developed neuropathy 40 years ago with all the horrible pain & balance issues. Many years later the pain went away replaced by numbness. The numbness went from my feet just past my waist causing ED, bladder & bowel complications. The numbness eventually regressed and is mild now and mostly affects my feet with some in my ankles and lower legs. I do have weakness in my legs. It's difficult to tell how much of my balance problems are related to neuropathy and how much is due to my seizures and seizure medications.
Take care,
Jake

REPLY
1 reply
matk | @matk | 15 hours ago
In reply to @jakedduck1 "@matk I'm sorry to hear that you have neuropathy. If I were you, I wouldn't fear..." + (show)
@jakedduck1

@matk
I'm sorry to hear that you have neuropathy.
If I were you, I wouldn't fear what may or may not happen in the future. 99% of the things you worry about never happen and the other one percent is going to happen regardless so what's the point in worrying about it.
I developed neuropathy 40 years ago with all the horrible pain & balance issues. Many years later the pain went away replaced by numbness. The numbness went from my feet just past my waist causing ED, bladder & bowel complications. The numbness eventually regressed and is mild now and mostly affects my feet with some in my ankles and lower legs. I do have weakness in my legs. It's difficult to tell how much of my balance problems are related to neuropathy and how much is due to my seizures and seizure medications.
Take care,
Jake

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Jake, thank you for your thoughts. I am generally doing well with the Gabapentin (1200 mg 3x daily), but it's the occasional night when all my pains are flaring up, including the prickling that started it all, and I think if this is what the future is ... I am not sure I will be able to bear it. That is my fear.
But you're right. It is not as though worrying will change things. I take long walks every day because it makes me feel better overall and seems to keep THOSE nights away.
Thank you,
Mat

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