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.

allisonsnow | @allisonsnow | Jul 28, 2018
In reply to @allisonsnow "One thing I have wondered is how much my low oxygen levels may have to do..." + (show)
@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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pdsi43one | @pdsi43one | Jul 28, 2018

I have PN from pernicious anemia. Anyone else?

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2 replies
kruppm | @kruppm | Jul 28, 2018
In reply to @allisonsnow "One thing I have wondered is how much my low oxygen levels may have to do..." + (show)
@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

Jump to this post

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

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Wendyb | @wendyb | Jul 30, 2018
In reply to @johnbishop "If you live within driving distance of the Minneapolis area our next meeting of the Minnesota..." + (show)
@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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trwee | @trwee | Aug 9, 2018

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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2 replies
robertlclark | @robertlclark | Aug 10, 2018

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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4 replies
Mentor
John, Volunteer Mentor | @johnbishop | 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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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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 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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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 | @robertlclark | 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?

Jump to this post

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

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