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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.

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Jake | @jakedduck1 | Mar 29, 2021
In reply to @sandibritton2021 "I am brand new to this group and have already appreciated the posts. Actually I have..." + (show)
Profile picture for sandibritton2021 @sandibritton2021

I am brand new to this group and have already appreciated the posts. Actually I have interests in many groups and qualify for many. My neuropathy started some time ago. In my thirties I was in competitive running and ran two marathons which was a strain on my nerves to say the least. I m noticing weakness in my hands but primarily my problems are in my feet. By the end of the day, showering is a big challenge and I have had many times when I was almost unable to walk. At night my feet feel numb. Perhaps I should get a Mayo doctor to take a look for an accurate diagnosis. Does anyone have any suggestions for a doctor for this condition?

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@sandibritton2021
You look so familiar. Do or did you live in California? If not you have a twin here.
Leonard

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pondoak | @pondoak | Mar 29, 2021
In reply to @sandibritton2021 "I am brand new to this group and have already appreciated the posts. Actually I have..." + (show)
Profile picture for sandibritton2021 @sandibritton2021

I am brand new to this group and have already appreciated the posts. Actually I have interests in many groups and qualify for many. My neuropathy started some time ago. In my thirties I was in competitive running and ran two marathons which was a strain on my nerves to say the least. I m noticing weakness in my hands but primarily my problems are in my feet. By the end of the day, showering is a big challenge and I have had many times when I was almost unable to walk. At night my feet feel numb. Perhaps I should get a Mayo doctor to take a look for an accurate diagnosis. Does anyone have any suggestions for a doctor for this condition?

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The Mayo Clinic does a great job if they take you. There is an application process.

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terryzrust | @terryzrust | Mar 29, 2021
In reply to @johnbishop "Hello @sandibritton2021 and @terryzrust, I would like to welcome you both Mayo Clinic Connect. I like..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @sandibritton2021 and @terryzrust, I would like to welcome you both Mayo Clinic Connect. I like the suggestion by @terryzrust to discuss your symptoms with your primary care doctor to see if they think you should see a neurologist for a diagnosis. Have you discussed your symptoms with your doctor?

@terryzrust - Have you been diagnosed with peripheral neuropathy?

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Yes, my neurologist diagnosed axonsal sensiomotor polyneuropathy via nerve conduction and EMG testing.

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 30, 2021
In reply to @bethwiseman "Hello, I’m Beth Wiseman and I’m dealing with PN for 3 years. I have no underlying..." + (show)
Profile picture for Beth Wiseman @bethwiseman

Hello, I’m Beth Wiseman and I’m dealing with PN for 3 years. I have no underlying conditions causing this. I’m basically at my wits end. Any recommendations for my symptoms.....nerves tingling in feet, burning in feet and legs.

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Hello Beth @bethwiseman. I would like to add my welcome to Connect along with other members. My small fiber PN is also idiopathic but fortunately I only have the numbness. I'm sorry to hear you haven't found much help with the burning in your feet and legs. You are definitely not alone with those symptoms so I'm hoping other members will be able to share their experience with you. You might find the following discussion helpful.

Burning Feet syndrome: https://connect.mayoclinic.org/discussion/burning-feet-syndrome/

Have you tried any alternative therapy or treatments?

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windsorchris | @windsorchris | May 1, 2021

"Walk This Way..." Everyone has different needs and levels of functioning so this applies to those who have decent balance and can go for walks. I find that if I turn around and walk backwards for short periods on my walks that it stretches my foot muscles and tendons differently and in fact just feels good.

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efgh1020 | @efgh1020 | May 3, 2021

I live in Rhode Island with my husband and have had a general diagnosis by a physiatrist, who performed an EMG test, with severe polyneuropathy possibly triggered by an autoimmune response to spinal surgery.
I am calling neurologists connected to Yale New Have and Rhode Island Hospital to get a more definitive diagnosis and possible way forward. New patient intakes are anywhere from July to September. One Intake coordinator was encouraging for an earlier appointment after I and my GP called. My physical and occupational therapists will also call to say they need a diagnosis to create a proper care plan for me. So, I am doing exercises to maintain some mobility with a walker. My upper body strength is still adequate for this although my legs have not gained strength. This is still very new for me, going from relative strength after the surgery to decreasing strength and sensation in my lower legs and feet, but with comet like nerve pain in my shins, arches and ankles.
I’m grateful for support from family, friends, PT,OT, and home health aides since coming home from a physical rehab, but am also looking for support from a reputable site like Mayo Clinic.

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1 reply
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Mentor
John, Volunteer Mentor | @johnbishop | May 3, 2021
In reply to @efgh1020 "I live in Rhode Island with my husband and have had a general diagnosis by a..." + (show)
Profile picture for efgh1020 @efgh1020

I live in Rhode Island with my husband and have had a general diagnosis by a physiatrist, who performed an EMG test, with severe polyneuropathy possibly triggered by an autoimmune response to spinal surgery.
I am calling neurologists connected to Yale New Have and Rhode Island Hospital to get a more definitive diagnosis and possible way forward. New patient intakes are anywhere from July to September. One Intake coordinator was encouraging for an earlier appointment after I and my GP called. My physical and occupational therapists will also call to say they need a diagnosis to create a proper care plan for me. So, I am doing exercises to maintain some mobility with a walker. My upper body strength is still adequate for this although my legs have not gained strength. This is still very new for me, going from relative strength after the surgery to decreasing strength and sensation in my lower legs and feet, but with comet like nerve pain in my shins, arches and ankles.
I’m grateful for support from family, friends, PT,OT, and home health aides since coming home from a physical rehab, but am also looking for support from a reputable site like Mayo Clinic.

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Hello @efgh1020, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. I'm glad to hear you have a strong support team of family, friends and home health aides since your spine surgery.

There is another discussion that you might want to view to see if some of the symptoms are similar to yours:
- Anyone been diagnosed with arachnoiditis after spine surgery?: https://connect.mayoclinic.org/discussion/arachnoiditis-2/

@jenniferhunter and other members may have some information or suggestions to share with you. Are you able to share a little more about the specific type of spine surgery you are recovering from?

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jimmy 370 | @jimmy370 | May 8, 2021
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
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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

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Is there a cure for neuropathy?

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1 reply
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Mentor
John, Volunteer Mentor | @johnbishop | May 8, 2021
In reply to @jimmy370 "Is there a cure for neuropathy?" + (show)
Profile picture for jimmy 370 @jimmy370

Is there a cure for neuropathy?

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As far as I know there is no cure for neuropathy. There are ways to treat and manage the symptoms of neuropathy. I replied to your other post with a link to The Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/) which has a lot of helpful information. Another site to learn more about the types of neuropathy and treatment options is Neuropathy Commons (https://neuropathycommons.org/). It's good to learn as much as you can about your health conditions so that you can work with your doctors on a possible treatment.

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MGMolly | @Erinmfs | May 8, 2021
In reply to @johnbishop "The test is an Electromyography (EMG). EMG (Electromyography): About your Mayo Clinic Test - YouTube --..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

The test is an Electromyography (EMG).

EMG (Electromyography): About your Mayo Clinic Test - YouTube
-- https://www.youtube.com/watch

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wholly cow, this search function on Connect works! I remember this video, I'm glad it's still available. I have another one of these scheduled. The doctor says that at the time of the video, 1000 of these ? Did I get that right? I have them done to determine progression of myasthenia gravis, my left arm/leg goes numb.

EMG (Electromyography): About your Mayo Clinic Test – YouTube
— https://www.youtube.com/watch

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