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Living with Neuropathy - Welcome to the group

Posted by @colleenyoung, Fri, Jul 14 9:19am

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?

REPLY

MENTOR
John, Volunteer Mentor
@johnbishop

Posts: 1154
Joined: Mar 22, 2016
Posted by @johnbishop, Fri, Jul 14 9:25am

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

Sand
@sallymagint

Posts: 2
Joined: Jan 10, 2017
Posted by @sallymagint, Wed, Jul 19 7:15am

Thank you Colleen and John, I’m hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it’s a team approach and I’m a vital player. It’s not easy, in fact it’s damn hard a lot of the time and some days I wonder how I’m going to get through it but I don’t have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I’m in the process of undergoing treatment with neurosurgery planned in the not to distant future. It’s hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There’s no guarantees and it’s still a long road to travel but I’m crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven’t delved into it too much due to the complexity, it’s helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I’ve been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you’re made to feel it’s in your head. But I’m not giving up, I can’t give up and through perseverance I’ve found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved

MENTOR
John, Volunteer Mentor
@johnbishop

Posts: 1154
Joined: Mar 22, 2016
Posted by @johnbishop, Wed, Jul 19 7:39am

Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is a great place to ask questions, share your story and learn about others with similar health issues and possible treatments. Neuropathy can be difficult to comprehend sometimes due to number of different types, diagnosis and possible treatments. It’s pretty awesome you have found some experienced specialists that are helping you. That is a big step.

Do you have a diagnosis you can share?

Mine is idiopathic small fiber peripheral neuropathy plus a few more issues. I have to share a story about the idiopathic diagnosis. I was at a Minnesota Neuropathy Association that had 3 different speakers. There was a short questions and answers session after each speaker. The first two speakers were asked the same question – how many people around the world are affected by peripheral neuropathy? The first speaker said the number was around 20 million or so. The second speaker said including China about 80 million had some form of neuropathy. The third speaker, an 80+ year old neurologist who still had a small practice and is doing research at the University of Minnesota to develop a inexpensive test to determine if you have peripheral neuropathy, said “in deference to my younger colleagues, idiopathic was named after the idiot neurologist who did the diagnosis. If you live long enough everyone gets neuropathy because the nerves will eventually start dying off”. He drew the biggest laugh from the crowd.

Hoping for some answers for you.

John

Sand
@sallymagint

Posts: 2
Joined: Jan 10, 2017
Posted by @sallymagint, Wed, Jul 19 8:43am

I’ve had a number of trauma injuries over 45 years of life which have resulted in some significant nerve damage. Although I’ve seen many Specialist there has been no specific type of neuropathy diagnosis, although most is peripheral, because there’s always been more pressing issues to contend with which steers Investigations in other directions.

I had a spinal injury 25 years ago and fractured 3 vertebrae after a fall on a working holiday in England. At the time although I knew I’d hurt myself I continued to backpack with a 25 kilo backpack around Europe. Hindsights a great thing but when we’re young we believe we’re infallable. A spinal fusion followed 6mths after I returned home. I suffered nerve damage and I’ve had 3 dorsal Column stimulators implanted over 20 years to help with nerve pain.
I’ve had a number of other injuries which resulted in ongoing nerve problems. I broke both ankles (at different times) which were pinned and put in casts. The plaster had to removed with both due to severe nerve pain affecting the external parts of my ankle. I couldn’t stand to have anything touch my ankle for at least 6 mths, no shoes, no sheet/blanket and at times even having my foot in water whether it be the shower, bath, pool was excruciating. Lots of desensitisation work to help my alter my bodies response to stimulus of any sort.
I had severe type 2 diabetes for which I was on insulin for over 5 years. I’m happy to say this is now controlled through diet and lifestyle change and I no longer have any medications to treat this.
I have moderate degeneration of thoracic and cervical spine with neuralgia affecting my strength and body’s response (over sensitive or sometimes lack of sensation) to stimuli.
I also have a Chiari Malformation which was diagnosed after a head injury. I stood up and became dizzy, fell and was knocked out on the TV cabinet on the way down. It’s believed the impact forced my brain through my skull and into my Spinal canal. A previous cranial CT before the accident did not show a Chiari which is how this reasoning was attained. In addition to Chiari it is suspected I have Syringomyelia (Syrinx or cysts on the spinal canal) which affects my strength and alters many sensations sometimes causing intense pain other times resulting in paralysis. The Syrinx if not treated appropriately may continue to cause irreversible damage. Because of my dorsal column stimulator I have been unable to have MRI scans which has meant some diagnosis can not be ascertained. The decision has been reached to remove the device so MRI’s can be taken which will happen in the next couple of weeks. I will then fly interstate in Australia to have decompression surgery and possible fusion of cervical spine. They will also decide how to treat the Syrinx. I have facial neuropathy which results in severe facial pain that brings me to the ground it is so severe. In combination with pain I have paralysis in my face, again my face responds in different ways to stimuli.

My team of specialists are somewhat baffled by the complexity of my conditions but they are slowly being able to bring it a together and gain a better understanding of what’s going on and why. That’s it in a nutshell, there’s more to it but these are the basics. Hope this gives a bit of insight

janetdh
@janetdh

Posts: 31
Joined: Nov 29, 2016
Posted by @janetdh, Wed, Jul 19 8:52pm

I feel exactly the same. If all I can accomplish re: CRPS and related neuropathy is increasing awareness, it makes it a little easier to accept my journey. Thank you on the other side of the globe.

amaze02
@amaze02

Posts: 3
Joined: Mar 21, 2016
Posted by @amaze02, Wed, Jul 19 7:14am

Diabetic nuropithy causes and treatment.

Blouf
@bloufitz

Posts: 1
Joined: Jul 18, 2017
Posted by @bloufitz, Wed, Jul 19 7:25am

I was diagnosed with triigeminal neuropathy many years ago! Left side of my face. Mainly, I just live with it. Not much else I can do! Also, had Moh’s micrographic surgery in 2000 close to the same area for basal cell skin cancer. Sometimes, I find I have a bit of a problem applying lipstick evenly.

Posted by @colleenyoung, Wed, Jul 19 3:18pm

Welcome, Blouf.
We also have a group of members talking about trigeminal neuralgia here: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

amaze02
@amaze02

Posts: 3
Joined: Mar 21, 2016
Posted by @amaze02, Wed, Jul 19 7:37am

I’m a type 2 diabetic , I get occasional pain in my legs. Trying to increase my knowledge, for treatment and slowing its progress.

Posted by @colleenyoung, Wed, Jul 19 3:16pm

@amaze02, you may also be interested in following the discussions in the Diabetes group here: https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

MENTOR
John, Volunteer Mentor
@johnbishop

Posts: 1154
Joined: Mar 22, 2016
Posted by @johnbishop, Wed, Jul 19 7:51am

@amaze02, @bloufitz – Mayo Clinic has a good explanations and a starting place to learn about peripheral neuropathy on their website:

http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/home/ovc-20204944

Also here is one of the best and easy to understand explanations of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

Mayo Clinic info on Trigeminal neuralgia:

http://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/basics/definition/con-20043802

Hoping other Connect members will also share what works for them.

John

suzylulu
@suzylulu

Posts: 16
Joined: Feb 02, 2017
Posted by @suzylulu, Wed, Jul 19 8:29am

Coleen and John, you are appreciated for your efforts in guiding and answering our questions.

MENTOR
John, Volunteer Mentor
@johnbishop

Posts: 1154
Joined: Mar 22, 2016
Posted by @johnbishop, Wed, Jul 19 8:46am

@suzylulu, thank you for the kind words! I think one of the real benefits of Mayo Connect is that it brings patients together in a safe place so that they are able to share their story, learn what others are doing and ask questions they may have. I found Connect in March of 2016 while searching for help and local support groups for my peripheral neuropathy. I’m so glad I did too.

Thanks again – keep sharing and asking questions – life is a learning journey! Psst…my motto is to learn at least one new thing a day. Sadly that one new thing is sometimes something I had learned in the past. That’s a great thing about being 74…senior discounts and no one expects you to remember everything!

John

janetdh
@janetdh

Posts: 31
Joined: Nov 29, 2016
Posted by @janetdh, Wed, Jul 19 8:56pm

John, so glad you & Colleen stsrted this group. Could you please check to see if I’m on the distribution list. Thanks much.

Posted by @colleenyoung, Thu, Jul 20 12:23pm

Janet,
To ensure that the Neuropathy group messages are included in your daily digest (email summary from Connect), be sure to follow the group. Here’s how:

1. Go to the Neuropathy group homepage https://connect.mayoclinic.org/group/neuropathy/
2. Click +Follow (below the description of the group).
3. Choose how you want to be notified (each message or only in the digest).
4. Click Update.
5. Close the pop-up.

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