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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.

taytamar | @taytamar | Mar 9, 2023
In reply to @cgs "I'm assuming that you have gotten an EMG and MRI and and imaging to see if..." + (show)
@cgs

I'm assuming that you have gotten an EMG and MRI and and imaging to see if you have a nerve damage in your back I have a couple discs that are missing in my lower back I have degenerative disc and sciatica I think that adds to my diabetic neuropathy I have type 2 diabetes I might take gabapentin I am praying and changing my diet and I've got my A1C from 6.4 down to 6.1 and my cholesterol is better I'm eating berries blueberries mixed berries avocados spinach occasionally broccoli I'd like to eat more salmon I try to eat a low fat cottage cheese and yogurt and just making tweaks like this my cholesterol is getting better my triglycerides are getting better I drink a lot more water I don't drink pop anymore I am battling with coffee the caffeine is not good for nerves I was told this by American diabetic Association I was told this by Calgary neuropathy Association and so I am really battling to cut back on coffee and also chocolate which has caffeine in it and the sugar is not good for my diabetes either but just I trust in the Lord and I keep praying I ask other Christians at church to pray at different churches and a lot of Christian friends that I have I asked them to pray I am making progress It's it's slow I was misdiagnosed for 4 years with depression and the Lord sent a doctor to me that gave me the right medication for anxiety and it helped me to be able to start driving the car and to be able to quit rocking when I was sitting and I was able to sleep at night without sleepwalking and also I am able to watch movies and read concentrate better and I just thank God he's my savior he died on the cross for my sins and rose from the dead he's the great physician

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I will absolutely pray for you, I also suffer from Anxiety and depression so I understand! Hang on GOD has us 🙂

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1 reply
cgs | @cgs | Mar 9, 2023
In reply to @taytamar "I will absolutely pray for you, I also suffer from Anxiety and depression so I understand!..." + (show)
@taytamar

I will absolutely pray for you, I also suffer from Anxiety and depression so I understand! Hang on GOD has us 🙂

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Thank you,God be with you.

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judee1948 | @judee1948 | Mar 9, 2023
In reply to @julbpat "R" + (show)
@julbpat

R

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I have used Dr Motion and Orthosleeve, both on Amazon

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2023

Happy Friday everyone! I just wanted to share our latest Member Spotlight for one of our neuropathy group members. I hope you like learning a little more about one of your fellow Connect members as much as I do.

Daily exercise and pain relief: Meet @jenatsky - https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/daily-exercise-and-pain-relief-meet-jenatsky/

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hossie | @hossie | Mar 10, 2023

Whenever I get in a swimming pool and move around much I noticed that my feet are much more tingly for the rest of the day. I am wondering if this is a good thing, or a bad thing? Does the pressure of the water stimulate nerves in the way that slows the progression of neuropathy, or does it have no positive effects and makes it harder to sleep in the evening because my feet are so much more tingly?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 13, 2023

Hi all, many of you in the Neuropathy support group have met @jenatsky. He is featured in this week's Member Spotlight by @johnbishop. Learn more how @jenatsky finds a balanced menu with volunteering, exercise, cooking, and pain relief

- Daily exercise and pain relief: Meet @jenatsky https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/daily-exercise-and-pain-relief-meet-jenatsky/

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 16, 2023

Hello @sarahfloranne, Welcome to Connect. I saw your recent post in the Connect Spotlight for @jenatsky here https://connect.mayoclinic.org/comment/826154/ and thought I would respond in this discussion so that you can connect with other members with joint replacements and neuropathy like @artscaping, myself and others. If you click the link below it will take you to the beginning of the discussion where you can learn what others have shared.

--- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/.

I thought you might also find the following information on Living Well with neuropathy on the Foundation for Peripheral Neuropathy's website - https://www.foundationforpn.org/living-well/.

I too have tripped in the past but am fortunate that I have not broken any bones. I am much more careful walking now and trying to be more conscious of existing hazards that may cause me to trip. Do you do any exercises to help with your balance and walking?

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1 reply
michael149 | @michael149 | Mar 17, 2023
In reply to @johnbishop "Hello @sarahfloranne, Welcome to Connect. I saw your recent post in the Connect Spotlight for @jenatsky..." + (show)
@johnbishop

Hello @sarahfloranne, Welcome to Connect. I saw your recent post in the Connect Spotlight for @jenatsky here https://connect.mayoclinic.org/comment/826154/ and thought I would respond in this discussion so that you can connect with other members with joint replacements and neuropathy like @artscaping, myself and others. If you click the link below it will take you to the beginning of the discussion where you can learn what others have shared.

--- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/.

I thought you might also find the following information on Living Well with neuropathy on the Foundation for Peripheral Neuropathy's website - https://www.foundationforpn.org/living-well/.

I too have tripped in the past but am fortunate that I have not broken any bones. I am much more careful walking now and trying to be more conscious of existing hazards that may cause me to trip. Do you do any exercises to help with your balance and walking?

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get with a pt sppecializing in neuropathy and she willl give you 5 exercises to do 3x pper day

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mermaid7272 | @mermaid7272 | Mar 29, 2023

Last year I had 10 IVIG treatments for autoimmune encephalopogy (SP?), a brain inflamation.

Each treatment was charged to my insurance at $17,000, luckily not my out of pocket expense!
They seemed to work, as I no longer take them, but then I could no longer afford the high cost

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cheesehead10 | @cheesehead10 | Mar 29, 2023

Just found out about this group. I have Charcot-Marie-Tooth and would love to compare notes if anyone else has this condition. Mine is Late Onset Type 2. Thanks much.

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