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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.

wisfloj | @wisfloj | Jun 25, 2020

That’s good news, I do enjoy vodka & tonic! 😋 just lightening the mood. But yes, this is not fun and symptoms change throughout the day/week. I am back to this group after months away, caring people with knowledge and opinions to share!

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1 reply
avmcbellar | @avmcbellar | Jun 25, 2020

Hi @mertgraves I have seen many patients take baclofen and heard of the quinine in tonic water. I believe the drug is no longer produced as in the older days. Does the quinine and the baclofen help you?

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1 reply
mertgraves | @mertgraves | Jun 25, 2020
In reply to @avmcbellar "Hi @mertgraves I have seen many patients take baclofen and heard of the quinine in tonic..." + (show)
@avmcbellar

Hi @mertgraves I have seen many patients take baclofen and heard of the quinine in tonic water. I believe the drug is no longer produced as in the older days. Does the quinine and the baclofen help you?

Jump to this post

I just took Balcofen last night for the first time and I was able to sleep a little. The cramps were much milder I do believe. As for the tonic water I tried but honestly I ended up pouring it down the drain. It made me gag literally 😂. I'm hoping tonight I will get even more rest due to the Balcofen. It is the first thing that has seem to do anything for me.

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avmcbellar | @avmcbellar | Jun 25, 2020

@mertgraves that is good news! I hope you will get more sleep. If if were me I would do one thing at a time so I can tell better which is helping. What do you think may have caused the gagging, the seltzer? The water should help with digestion. Will adding ice and sipping the water through a straw help you?

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1 reply
mertgraves | @mertgraves | Jun 25, 2020
In reply to @avmcbellar "@mertgraves that is good news! I hope you will get more sleep. If if were me..." + (show)
@avmcbellar

@mertgraves that is good news! I hope you will get more sleep. If if were me I would do one thing at a time so I can tell better which is helping. What do you think may have caused the gagging, the seltzer? The water should help with digestion. Will adding ice and sipping the water through a straw help you?

Jump to this post

Well I just barfed at the smell of the tonic water and baby sip on my tongue. So my relief was definitely from the it Balcofren I'm thinking. I drink at least a gallon of water every day.

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1 reply
fiesty76 | @fiesty76 | Jun 25, 2020
In reply to @mertgraves "Thank you. I do have the feelings in my hands and arms as well. Yes I..." + (show)
@mertgraves

Thank you. I do have the feelings in my hands and arms as well. Yes I have had the test done just recently and have also gone back to my Primary. She has referred me to another Nuerologist as she says It appears I have lost at least 50% of the strength in my right leg and foot. Hopefully someone can get an idea of what to do with me.

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@mertgraves, What a shock to learn that you may have lost so much strength in one leg and foot. So glad your primary doc has referred you to another neurologist. Hope the new doc will find a treatment or meds to help. Please let us know what you learn, ok?

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mertgraves | @mertgraves | Jun 25, 2020

Thanks for your concern. Will definitely keep you posted. Waiting for an appointment.

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fiesty76 | @fiesty76 | Jun 25, 2020
In reply to @wisfloj "That’s good news, I do enjoy vodka & tonic! 😋 just lightening the mood. But yes,..." + (show)
@wisfloj

That’s good news, I do enjoy vodka & tonic! 😋 just lightening the mood. But yes, this is not fun and symptoms change throughout the day/week. I am back to this group after months away, caring people with knowledge and opinions to share!

Jump to this post

I like your sense of humor, @wisfloj! I do the tonic without the vodka most days but will admit to a lovely Bloody Mary to start a special holiday...so glad we celebrate holidays!!! vbg

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1 reply
avmcbellar | @avmcbellar | Jun 25, 2020
In reply to @mertgraves "Well I just barfed at the smell of the tonic water and baby sip on my..." + (show)
@mertgraves

Well I just barfed at the smell of the tonic water and baby sip on my tongue. So my relief was definitely from the it Balcofren I'm thinking. I drink at least a gallon of water every day.

Jump to this post

If you can drink regular water without any issues, there must an ingredient in the tonic water that does not agree with you. I know some tonic waters come flavored and some are sweetened or diet(unsweetened). Perhaps an alternate will help.

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1 reply
avmcbellar | @avmcbellar | Jun 25, 2020
In reply to @fiesty76 "I like your sense of humor, @wisfloj! I do the tonic without the vodka most days..." + (show)
@fiesty76

I like your sense of humor, @wisfloj! I do the tonic without the vodka most days but will admit to a lovely Bloody Mary to start a special holiday...so glad we celebrate holidays!!! vbg

Jump to this post

I agree @fiesty76, lol. I do without for the time being. I don’t want to create more nerve problems by consuming products that will change the nerve behavior.

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