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.

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 hi Leonard. Does that require a prescription?

venki | @venki | Mar 2, 2021

In reply to @bustrbrwn22 "@jakedduck1 hi Leonard. Does that require a prescription?" + (show)

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

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> *Reply*
> @jakedduck1 hi Leonard. Does that require a prescription?
> VIEW & REPLY
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> or reply to this email to respond.
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Jake | @jakedduck1 | Mar 2, 2021

In reply to @bustrbrwn22 "@jakedduck1 hi Leonard. Does that require a prescription?" + (show)

@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

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, 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

bethunger | @bethunger | Mar 2, 2021

yes, thanks so much you are very kind.

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 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

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)

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

bethunger | @bethunger | Mar 2, 2021

In reply to @jakedduck1 "@straightway22 I just edited my earlier post. Sorry it was such a mess. Take it easy,..." + (show)

I believe you were responding to someone else, so I hope it is ok if I reply.I have epilepsy too. It started to kick up when I was first diagnosed with neuropathy, peripheral. I take Levitracetam which helps the seizures, but I wonder if it isn't the cause of my walking difficulty. I tip sometimes to one side, odd isn't it? Well, it is so nice to find someone that has seizures and Neuropathy. Thanks again, Beth

bethunger | @bethunger | Mar 2, 2021

Thanks for the lovely welcome. I just wanted to gain some more information regarding Peripheral Neuropathy. It is always nice to meet other people that have similar difficulties. I am always surprised when I wake up in the morning!

benita7jay | @benita7jay | Mar 2, 2021

Benita Little 73, retired Special Educator Neuropathy in feet for years, Itching in vaginal area of no obvious cause, recent itching in hands and lower arms, as well as itching in head. Have seen dermatologist who says itching is internal. Had bladder, kidneys, chest xray, pap smear, culture, to rule out cancer. Feet were numb, now ankles and feet itching. I do not have pain. Waiting on brain scan. Can itching be neuropathy? Can vaginal itching with no obvious cause be neuropathy? I am living in Hell right now. Except for numb feet, these other things all started 3 years ago when I had no electricity for 3 days in a freeze. The vaginal itching is the worst but there is no sign of anything there. Any help appreciated. Don't know if I'm in the right place.