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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.

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!

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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.

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2 replies
Leonard | @jakedduck1 | Mar 2, 2021
In reply to @bethunger "I believe you were responding to someone else, so I hope it is ok if I..." + (show)
@bethunger

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

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@bethunger
Anyone & everyone is welcome.
here is a link to the Epilepsy & Seizure discussions.
https://connect.mayoclinic.org/group/epilepsy-2bb359/?utm_campaign=search
There is not nearly the activity on it as there is here.
Jake

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 2, 2021
In reply to @benita7jay "Benita Little 73, retired Special Educator Neuropathy in feet for years, Itching in vaginal area of..." + (show)
@benita7jay

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.

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@benita7jay, There are 2 discussions you may want to join in which talk about itching and neuropathy. There you will meet @artscaping and other members discussing itching and neuropathy.

- What do you do for Neuropathy itch?: https://connect.mayoclinic.org/discussion/what-do-you-do-for-neuropathy-itch/
- The "itch".....An update about testing and treating.: https://connect.mayoclinic.org/discussion/the-itch-an-update-about-testing-and-treating/

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Valerie | @lacy2 | Mar 2, 2021
In reply to @benita7jay "Benita Little 73, retired Special Educator Neuropathy in feet for years, Itching in vaginal area of..." + (show)
@benita7jay

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.

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@benita7jay I just sent you a private message J.

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Leonard | @jakedduck1 | Mar 2, 2021
In reply to @avmcbellar "@jakedduck1 Besides the reasons you mentioned I would think doctors would not recommend it for seizure..." + (show)
@avmcbellar

@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

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@avmcbellar
I don't believe it's possible to swallow your tongue although when unconscious the tongue is more likely to block the airway. One reason why the recovery position of being on your side is important.
Against everything you read I'm a proponent of seizure bite sticks during a seizure.
Jake

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1 reply
artist01 | @artist01 | Mar 2, 2021
In reply to @fiesty76 "@jakedduck1 and @artist01, I am so sorry both of you are having such difficulties! Next time..." + (show)
@fiesty76

@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.

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@fiesty76 Aw, thankyou for your sweet comment to Jake and @artist01.
I often wonder if I should ask for a little cheese with my whine! G0L

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avmcbellar | @avmcbellar | Mar 2, 2021
In reply to @jakedduck1 "@avmcbellar I don't believe it's possible to swallow your tongue although when unconscious the tongue is..." + (show)
@jakedduck1

@avmcbellar
I don't believe it's possible to swallow your tongue although when unconscious the tongue is more likely to block the airway. One reason why the recovery position of being on your side is important.
Against everything you read I'm a proponent of seizure bite sticks during a seizure.
Jake

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@jakedduck1 yes, you are right. I was referring to safety and obstruction. Laying on one’s side is a good safety tip. Basically, making sure a person cannot harm his or her self during a seizure is all anyone can do to help that person, right? How do you prepare to use a stick when you are not aware a seizure is coming?

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sunnyflower | @sunnyflower | Mar 3, 2021
In reply to @sunnyflower "Hi Toni and Hank/Linda @jesfactsmon, please forgive if this is a repeat. I 've gotten some..." + (show)
@sunnyflower

Hi Toni and Hank/Linda @jesfactsmon, please forgive if this is a repeat. I 've gotten some great advice about supplements here on Connect and recently joined ConsumerLab.com after learning about this site here too. I have been extremely impressed with the wealth of information and content they have on supplements and many more things. I believe I paid about $47 for the year but it's a little bit cheaper to buy a 2-year subscription. They send emails and I can't stop reading the many, many excellent, comprehensive subjects they report about. So far, it's been well worth the money!

Warmest wishes, Sunnyflower 😊🙏❤️

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Hi Hank/Linda @jesthefactsmon, I have 383 emails in my neuropathy group and some in other groups. So please forgive if this is a repeat. Consumerlab.com is not owned by any drug manufacturers aka Big Pharma. They are an independent company who hires various labs to do studies. They also provide a wealth of information on many subjects besides supplements. I've been very impressed and it takes a lot to impress me! Hope you all are well and thriving. Warmest wishes, Sunny

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1 reply
fiesty76 | @fiesty76 | Mar 3, 2021
In reply to @jakedduck1 "@artist01 “Stoic?” not hardly. Although I did have problems excepting my diagnosis in the beginning, I..." + (show)
@jakedduck1

@artist01
“Stoic?” not hardly.
Although I did have problems excepting my diagnosis in the beginning, I came to the conclusion that “it is what it is.” I needed to move past the seizures and the stigma which was so bad in the ’60s. I think coping with life is much easier than ignoring your fate. I only have one hang up. I suppose I could see a psychologist and try to figure it out. A dear friend of mine was a psychologist and I never thought to ask him. He died in 2009 on his driveway from Convulsive Status Epilepticus. I had a great family and terrific friends who didn't care if I had Epilepsy.
I don't mind the loss of memory or Neuropathy but to this day losing the ability to play the piano like I once did is something I still have problems coping with though I haven't any memory of ever playing it. I went to a parochial school and although I don’t remember I was told according to my family I could play the piano in my junior year in chapel every morning which I was looking forward to but was kicked out of school when I was a sophomore. Couldn't blame them. Hard to learn during seizures and sleeping for hours or days at a time after one. So “it is what it is.” I just wish I could deal with this one issue better. I suppose I really should get rid of the piano.
Take care up in the Artic where you must live,
Jake

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Hokay, @jakedduck1, while I always enjoy your posts, I do think that along with "upbeat", funny, pied piper of all things sweet and chocolate, stoic is a fit for you as well...just sayin', Smiles

As for as the piano issue, I received a partial music scholarship "in another life". Piano playing was my nirvana growing up and for many years into adulthood. However, my daughter showed no interest in learning to play and as years passed, I spent less and less time playing.

When I renovated my home several years ago, I donated my grand upright piano to a local univ.'s music dept. There are occasional moments when I miss the piano but I've forgotten so much that it would probably be like completely starting over.

As a former educator, I am so saddened that you were kicked out of school due to your seizures and after effects. More than one of my students over the years suffered seizures in class and while frightening, none were ever asked to leave the school. Regardless of how far we've come in better understanding and learning how to help students with chronic health issues, we still have far to go in creating inclusive environments for them.

As for your wish to deal better with this one piano issue, I'll just say that with my flaky mind and short term memory issues that for me, "out of sight" means "out of mind" ...regardless of the issue! LOL

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