Living with Neuropathy - Welcome to the group

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?

@allisonsnow

One thing I have wondered is how much my low oxygen levels may have to do with my neuropathy …that it may be a circulation problem as much as a nerve problem. Anyone have any thoughts on that? Oh yeah I am on 3 liters O2 24/7

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I know I have neuropathy ( was result of side effects of chemo drugs) which Dr. say after min. healing would be permanent…just trying to consider all/any possibilities

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I have PN from pernicious anemia. Anyone else?

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@allisonsnow

One thing I have wondered is how much my low oxygen levels may have to do with my neuropathy …that it may be a circulation problem as much as a nerve problem. Anyone have any thoughts on that? Oh yeah I am on 3 liters O2 24/7

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didn't know chemo would cause that.
so stem cell transplant chemo could make cidp worse???

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what foods will help?

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@johnbishop

If you live within driving distance of the Minneapolis area our next meeting of the Minnesota Neuropathy Association will be an interesting one. A meeting flyer is attached. I will try to take notes and post them here after the meeting. Unfortunately they don't have videos of the meetings.

Saturday, August 4th at 10 AM
Speaker: William Hoffman of the U of M Medical School
Topic: Stem Cells and Regenerative Medicine: A Revolution Picks Up the Pace
MN Neuropathy Association website: http://neuropathy-mn.org/

John

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John…thank you for being willing to take notes and post. Many of us, I am sure, will not be able to go but would be interested in your information.
Thank you.

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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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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

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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Hi @robertclark, I'm still trying to write up my notes from the recent MN Neuropathy Association meeting on Stem Cell Treatments but I do have one slide that sums up where stem cell treatments are for peripheral neuropathy. The last bullet is key to making stem cell treatment available for PN.

Outlook for treating peripheral neuropathy
* Stem cell transplantation remains largely at the pre-clinical trial stage.
* Proper stem cell homing and migration remain a concern.
* Stem cell transplantation has shown some benefit but is still inferior to nerve repair with conventional techniques.
* Pre-clinical and eventually clinical studies comparing different types of stem cell are needed.
* Optimal Schwann cell differentiation has yet to be achieved.

A little explanation for the last bullet:

The Wound Microenvironment Reprograms Schwann Cells to Invasive Mesenchymal-like Cells to Drive Peripheral Nerve Regeneration
https://www.cell.com/neuron/abstract/S0896-6273(17)30843-7

The repair Schwann cell and its function in regenerating nerves
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4929314/

John

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@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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Hello @robertlclark

From your last sentence, I see that you want to find your previous posts. Is that correct? If so, just "click" on your username, @robertclark where ever it appears and it will take you to your Profile Page. If you scroll down that Profile Page, you will see all of your posts. You can click on "reply" and it will take you to the exact page where your post appears and you can see any of the other posts in reply to yours. Hope that is understandable. If not, @johnbishop can probably give better instructions. He is our teacher guru here on Connect.

Teresa

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@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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Thank you John, many companies are stating that they have successfully treated PN using stem cells.

Liked by Dee

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

Thanks!

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@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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@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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@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.

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@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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