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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 | Mar 1, 2021
In reply to @bustrbrwn22 "I too have lichen planus everywhere. Does anyone have anything they use for numbing your mouth..." + (show)
@bustrbrwn22

I too have lichen planus everywhere. Does anyone have anything they use for numbing your mouth so you can enjoy normal food every once in a while?

Jump to this post

@bustrbrwn22
When I used to bite my tongue and cheek from so many seizures. I used Lidocaine spray.
Jake

REPLY
1 reply
artist01 | @artist01 | Mar 2, 2021
In reply to @jakedduck1 "@artist01 Haha, me with a paintbrush. Now that's funny. A speech pathologist was at my house..." + (show)
@jakedduck1

@artist01
Haha, me with a paintbrush. Now that's funny.
A speech pathologist was at my house one day and he said I want you to draw a portrait of yourself. Oh yeah right sure. I said are you sure they'll have room in the Louvre maybe next to the Mona Lisa?
Well, I started on my masterpiece. He didn’t believe me when I said I couldn’t draw. But he forced my hand so I started drawing my stick figure portrait.
He wasn’t really interested in what it would look like he was interested in what it contained, mouth, nose hair, shoes, pants shirt & attempted to draw a woman's purse in his hand. He asked what the square and curved line was, I said he's a purse snatcher.
So I guess right now you know that a paintbrush in my hand would be a major disaster. Maybe I could paint a canvas solid black and just say it's midnight.
To be honest I think that would look better than some of the paintings I see hanging in art galleries. I think the way people describe paintings and wine is hilarious. I saw a guy and he was talking about wine and he said it has an earthy flavor, does that mean it tastes like dirt?
I took a calligraphy class with a friend and we had to draw the lines. The class was three hours long and at the end of the class I was still trying to draw my lines believe it or not. And then the teacher says to put our work on the board oh yeah right sure like that’s gonna happen. My friends work was beautiful but needless to say I never went back.Still to this day I can’t draw a straight line. you’re probably sick of people asking you this, I think you said that but anyway I wish I had a painting of my favorite mountain Mount Shasta in California painted by you.
Take it easy,
Jake

Jump to this post

@jakedduck1. Hahaha Jake. No worries, I can't draw a straight line either! And your all-black painting could have potential in the art world. There's a very famous all-white painting I learned about in art school Art History! The artist's name escapes me just now.
If I ever get back to painting again, I'd be honored to paint your beloved Mt. Shasta for you.
I hope you have a great day today.
Laurie

REPLY
fiesty76 | @fiesty76 | Mar 2, 2021
In reply to @jakedduck1 "@avmcbellar Okay, if do you want to help with any questions I got one for you...." + (show)
@jakedduck1

@avmcbellar
Okay, if do you want to help with any questions I got one for you.
I read this but I’m not sure if it’s true. It said when you’re neuropathy changes from all or most of the painful symptoms go away and you get more numbness your Neuropathy is getting worse.
What do you think?
Ever hear the before? Are used to have all the horrendously painful symptoms but they went away and now The numbness has gone all the way up to just passed my waist. I can’t feel my feet at all and keep trying to takeoff my shoes and socks which you’re already off but I can’t tell my lower legs are pretty bad too and the numbness eases the farther up it goes, at least for now.
Any ideas,
Jake

Jump to this post

@jakedduck1 and @artist01, I am so sorry both of you are having such difficulties! Next time I begin to whine over some mild discomfort, I'll think of both of you and hush! Thank you both for being so upbeat and positive despite these growing challenges.

REPLY
1 reply
bustrbrwn22 | @bustrbrwn22 | Mar 2, 2021
In reply to @jakedduck1 "@bustrbrwn22 When I used to bite my tongue and cheek from so many seizures. I used..." + (show)
@jakedduck1

@bustrbrwn22
When I used to bite my tongue and cheek from so many seizures. I used Lidocaine spray.
Jake

Jump to this post

@jakedduck1 hi Leonard. Does that require a prescription?

REPLY
2 replies
venki | @venki | Mar 2, 2021
In reply to @bustrbrwn22 "@jakedduck1 hi Leonard. Does that require a prescription?" + (show)
@bustrbrwn22

@jakedduck1 hi Leonard. Does that require a prescription?

Jump to this post

On Tue, 2 Mar, 2021, 7:22 pm Mayo Clinic Connect, wrote:

>
>
> Mayo Clinic Connect
> *Reply by* *@bustrbrwn22
> *
> on Tue, Mar 2
>
> *Reply*
> @jakedduck1 hi Leonard. Does that require a prescription?
> VIEW & REPLY
>
> or reply to this email to respond.
>
> *This Discussion is a part of Neuropathy
> *
> ------------------------------
> Unsubscribe
>
> from this thread.
>

--000000000000169c7e05bc8e5c56
Content-Type: text/html; charset="UTF-8"
Content-Transfer-Encoding: quoted-printable

On Tue, 2 Mar, 2021, 7:22 pm Mayo Clinic Connect, wrote:=C2=A0Mayo Clinic ConnectReply by @bustrbrwn22=
on Tue, Mar 2Reply@jakedduck1 hi Leona=
rd. Does that require a prescription?=
VIEW & REPLY=
or reply to this email to respond.This Discussion is a part of NeuropathyUnsubscribe fro=
m this thread.

--000000000000169c7e05bc8e5c56--

REPLY
1 reply
Leonard | @jakedduck1 | Mar 2, 2021
In reply to @bustrbrwn22 "@jakedduck1 hi Leonard. Does that require a prescription?" + (show)
@bustrbrwn22

@jakedduck1 hi Leonard. Does that require a prescription?

Jump to this post

@bustrbrwn22
Yes & no.
I got the prescription one but there are over the counter versions. However, I had a hard time getting it from the doctor. Probably because it must be used sparingly. It may cause breathing problems and swallowing numbs the throat causing its own problems. Food could go into the trachea and cause choking, etc. Occasionally I took small sips of Ensure.
Take care,
Jake

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 2, 2021
In reply to @venki "On Tue, 2 Mar, 2021, 7:22 pm Mayo Clinic Connect, wrote: > > > Mayo Clinic..." + (show)
@venki

On Tue, 2 Mar, 2021, 7:22 pm Mayo Clinic Connect, wrote:

>
>
> Mayo Clinic Connect
> *Reply by* *@bustrbrwn22
> *
> on Tue, Mar 2
>
> *Reply*
> @jakedduck1 hi Leonard. Does that require a prescription?
> VIEW & REPLY
>
> or reply to this email to respond.
>
> *This Discussion is a part of Neuropathy
> *
> ------------------------------
> Unsubscribe
>
> from this thread.
>

--000000000000169c7e05bc8e5c56
Content-Type: text/html; charset="UTF-8"
Content-Transfer-Encoding: quoted-printable

On Tue, 2 Mar, 2021, 7:22 pm Mayo Clinic Connect, wrote:=C2=A0Mayo Clinic ConnectReply by @bustrbrwn22=
on Tue, Mar 2Reply@jakedduck1 hi Leona=
rd. Does that require a prescription?=
VIEW & REPLY=
or reply to this email to respond.This Discussion is a part of NeuropathyUnsubscribe fro=
m this thread.

--000000000000169c7e05bc8e5c56--

Jump to this post

@venki, When you reply to an email notification you should be clicking on the VIEW & REPLY button at the bottom of the email instead of using the reply to the sender function of your email program on your mobile device. It makes it really difficult for other members to read your posts and answer any questions you might have. I've deleted the extraneous email program information from your previous replies but left it here so that you can see. Does that make sense?

Thanks! John
REPLY
bethunger | @bethunger | Mar 2, 2021

yes, thanks so much you are very kind.

REPLY
avmcbellar | @avmcbellar | Mar 2, 2021
In reply to @jakedduck1 "@bustrbrwn22 Yes & no. I got the prescription one but there are over the counter versions...." + (show)
@jakedduck1

@bustrbrwn22
Yes & no.
I got the prescription one but there are over the counter versions. However, I had a hard time getting it from the doctor. Probably because it must be used sparingly. It may cause breathing problems and swallowing numbs the throat causing its own problems. Food could go into the trachea and cause choking, etc. Occasionally I took small sips of Ensure.
Take care,
Jake

Jump to this post

@jakedduck1 Besides the reasons you mentioned I would think doctors would not recommend it for seizure patients. Not being able to feel your tongue can become a safety hazard in case the tongue is swallowed or causes issues during a seizure. Toni

REPLY
1 reply
bethunger | @bethunger | Mar 2, 2021
In reply to @jakedduck1 "@artist01 Haha, me with a paintbrush. Now that's funny. A speech pathologist was at my house..." + (show)
@jakedduck1

@artist01
Haha, me with a paintbrush. Now that's funny.
A speech pathologist was at my house one day and he said I want you to draw a portrait of yourself. Oh yeah right sure. I said are you sure they'll have room in the Louvre maybe next to the Mona Lisa?
Well, I started on my masterpiece. He didn’t believe me when I said I couldn’t draw. But he forced my hand so I started drawing my stick figure portrait.
He wasn’t really interested in what it would look like he was interested in what it contained, mouth, nose hair, shoes, pants shirt & attempted to draw a woman's purse in his hand. He asked what the square and curved line was, I said he's a purse snatcher.
So I guess right now you know that a paintbrush in my hand would be a major disaster. Maybe I could paint a canvas solid black and just say it's midnight.
To be honest I think that would look better than some of the paintings I see hanging in art galleries. I think the way people describe paintings and wine is hilarious. I saw a guy and he was talking about wine and he said it has an earthy flavor, does that mean it tastes like dirt?
I took a calligraphy class with a friend and we had to draw the lines. The class was three hours long and at the end of the class I was still trying to draw my lines believe it or not. And then the teacher says to put our work on the board oh yeah right sure like that’s gonna happen. My friends work was beautiful but needless to say I never went back.Still to this day I can’t draw a straight line. you’re probably sick of people asking you this, I think you said that but anyway I wish I had a painting of my favorite mountain Mount Shasta in California painted by you.
Take it easy,
Jake

Jump to this post

Thanks for the kind welcome. Has anyone noticed that they tip to one side? It is odd and doesn't happen often but it bothers me. Sometimes I fall, but usually I just grab onto something. Well, I just wondered, thanks.
Beth

REPLY
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