1. < Neuropathy
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.

Dee | @danielad | Aug 10, 2018

Hello @robertlclark. Do you have information (names, websites, etc.) of the companies that make the successful treatment statements?

Thanks!

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Dee | @danielad | Aug 10, 2018
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
@johnbishop

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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Hello Colleen (@colleenyoung), John (@johnbishop), and all!

My husband John has Peripheral Neuropathy. Initially (approx. 20 years ago), it was diagnosed as "Charcot-Marie-Tooth, type 2A" (CMT2A), an hereditary neuropathy. Now the diagnosis is unclear. It is much like John's (@johnbishop). It is still believed to be hereditary, and perhaps a "new" subgroup of CMT. It predominantly affects both lower legs and feet, with a lesser affect on both lower arms and hands. It does not (THANKFULLY) involve pain.

For those who are near Johns Hopkins, I would recommend Dr. Sumner, a Neurologist in the CMT Department. John has been very happy with her.

John has also volunteered to participate in a number of on-going Neuropathy studies (at Johns Hopkins) NOT involving medications (at present, anyway). We hope that his participation will help the research into Neuropathy.

In fact, I would encourage others to be part of studies/research possibly going on in your area. It may not help you in a direct, medical way, but it will certainly help you to feel better for helping in the research projects. And the person you may be helping, could be your child or grandchild!

Aside from the Peripheral Neuropathy, John has now developed Polymyalgia Rheumatica (PMR). Is it something potentially related to his Neuropathy? Not according to the Rheumatologist; however, we don't really know all of the potential ties to other diseases. So we have put Dr. Sumner (Neurologist at Johns Hopkins) and our Rheumatologist in touch. Could it lead to new/different findings? We don't know, but if this can help researchers look for different patterns, or in different areas, why not help them?

Our best to all!

John and D.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 10, 2018
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
@johnbishop

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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Hello @danielad

It is so good to hear of your involvement in clinical trials. Thank you for showing consideration for future generations. That is really paying it forward!

Teresa

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montanagary | @montanagary | Aug 10, 2018
In reply to @trwee "i was recently diagnosed with peripheral neuropathy and am on an almost max dose of gabapentin......" + (show)
@trwee

i was recently diagnosed with peripheral neuropathy and am on an almost max dose of gabapentin... with NO relief or progress/changes/improvements... help!

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If you can get CBD from a reliable marijuana supplier I find CBD twice a day really reduces my pain.

REPLY
Dee | @danielad | Aug 10, 2018
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
@johnbishop

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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Thanks for your reply Teresa @hopeful33250. Our take has been very simple -- We all have choices; we can give in to anger, despair, and other such negative emotions ... Or try to make the best of the cards we have been dealt, and try to funnel negative energy into something positive ...

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mamici1 | @mamici1 | Aug 10, 2018

Thank you. Hi, I am a 64 year old female who has (for the last 3-4) months experienced symptoms such as; numbness, cold (but warm to the touch), tingling, pins & needles, burning, and painful feet and hands. I have had an EMG, but was told the results were "normal." I was also told that the results mean only that my symptoms are not being caused by measurable, damage to the peripheral nerve or nerve coverings, so the cause is still unknown. I have frequent blood work, because I have GCA & PMR (diagnosed in 11/2017), but have been told my symptoms above are not related to my AI diseases or the high doses of Prednisilone I am taking. Any ideas, thoughts or comments are welcome. Thanks

REPLY
4 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 10, 2018
In reply to @mamici1 "Thank you. Hi, I am a 64 year old female who has (for the last 3-4)..." + (show)
@mamici1

Thank you. Hi, I am a 64 year old female who has (for the last 3-4) months experienced symptoms such as; numbness, cold (but warm to the touch), tingling, pins & needles, burning, and painful feet and hands. I have had an EMG, but was told the results were "normal." I was also told that the results mean only that my symptoms are not being caused by measurable, damage to the peripheral nerve or nerve coverings, so the cause is still unknown. I have frequent blood work, because I have GCA & PMR (diagnosed in 11/2017), but have been told my symptoms above are not related to my AI diseases or the high doses of Prednisilone I am taking. Any ideas, thoughts or comments are welcome. Thanks

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HI @mamici1 -- Welcome to Connect. I also have small fiber PN, as well as PMR. My PMR is currently in remission. I have no medical training or background but I think I believe a skin punch biopsy is another test that will show nerve damage that may not be detectable by an EMG. Here is a site with some information that may be helpful:

Cleveland Clinic - Skin Biopsy for Small Fiber Sensory Neuropathy
-- https://my.clevelandclinic.org/health/diagnostics/17479-skin-biopsy-for-small-fiber-sensory-neuropathy

Are you currently taking any medications? The reason I mention it is that there are some drugs that are known to have a side effect of causing PN.

Medication Induced Neuropathy
-- https://link.springer.com/article/10.1007/s11910-003-0043-8

The implications of statin induced peripheral neuropathy
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/

Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
-- http://care.diabetesjournals.org/content/28/8/2082.1

Does your doctor have any ideas or information on what might be causing your recent symptoms?

John

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 10, 2018
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
@johnbishop

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

Jump to this post

@danielad You are doing that well! Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 10, 2018

@johnbishop

Thanks, John. I found the list of meds that can cause neuropathy symptoms to be very informative. It provides some discussion material for my next visit to the doctor.

Teresa

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 10, 2018
In reply to @robertlclark "Hi Colleen, I have had Neuropathy in my left foot and left leg from stenosis. Tried..." + (show)
@robertlclark

Hi Colleen,
I have had Neuropathy in my left foot and left leg from stenosis. Tried many treatments and two lumbar laminectomies with little success. Now I have attended several seminars about stem cell treatments couple with other changes concerning meds, nutrition, laser treatments, EWOT, PNRT, vibration. Do you know if these treatments are effective or just failed treatments? Most of these treatments, even in combination are very expensive and most not covered by insurance.
Just something separate. How do I find responses to my posts when I return to this site?

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@robertlclark you'll find more information about neuropathy and stem cells in this discussion on Connect:

– Stem Cell Therapy for Neuropathy https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

The short answer: Unfortunately, because of the complexity of the brain and spinal cord, little spontaneous regeneration, repair or healing occurs. Therefore, brain damage, paralysis from spinal cord injury and peripheral nerve damage are often permanent and incapacitating. It is very early days and research in neuroregeneration is ongoing. Beware of charlatans.

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