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.

kruppm | @kruppm | Jul 4, 2018

my hope is for a breakthrough in neuroregeneration to help my son with his cidp. Dear Doctors, medical researchers...keep at it. many depend on you.

swiss | @swiss | Jul 5, 2018

have you or anyone heard of Stem Cell Therapy? Apparently there are US doctors, in patricular in Texas who are authorized to harvest your own fat cells after liposuction and get your own stem cells out of it the same day - these will then be applied IV or IT injection and may repair nerves and other tissues as well as it may reverse the demylielisation into remylielisationialisation damaged peripheral or central nerves, this may be the future of medicine as such as these injected stem cells can change into any type of needed cells.

John, Volunteer Mentor | @johnbishop | Jul 5, 2018

In reply to @axel "the side effects are only now appearing. Neuropathy pain in the left foot, only occasionally. What..." + (show)

Hello @axel, welcome to Connect. I'm glad you found us. Connect is a great place to ask questions and learn from others with similar health problems what they are doing for treatments.

Have you seen a doctor or a neurologist? Are you sure it's pain from neuropathy?

John

John, Volunteer Mentor | @johnbishop | Jul 5, 2018

In reply to @swiss "have you or anyone heard of Stem Cell Therapy? Apparently there are US doctors, in patricular..." + (show)

HI Felix @swiss, I'm hoping to learn a little more about stem cell therapy if I am able to make it to the August 4th Minnesota Neuropathy Association meeting. Their speaker from the University of Minnesota Medical School will be discussing some of the latest information (I hope).

I also feel it important to add it is so important to do your homework and due diligence when researching new treatment options. Stem cells offer a lot of hope. But where these is hope, there is hype and charlatans.
– FDA acts to remove unproven, potentially harmful treatment used in ‘stem cell’ centers targeting vulnerable patients https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573427.htm

You can read more about stem cells on the FDA’s website here: https://www.fda.gov/AboutFDA/Transparency/Basics/ucm194655.htm

Have you been doing anything new to help with your neuropathy?

John

sdemaria | @sdemaria | Jul 5, 2018

In reply to @axel "the side effects are only now appearing. Neuropathy pain in the left foot, only occasionally. What..." + (show)

Hello n good morning, yes I'm sure it is. Its been going on now for almost 20yrs. I,ve had 3nerve tests done over the yrs and I have myelinating nerves in my arms, reported back in 2015, early 2000's they said I had peripheral nerve damage and it was idiopathic. On top of that I've had 2 surgeries on my cervical spine. I had 4 discs collapse, now my latest MRI showed severe bone spurs at level c-3 and new lumbar issues as well. Thank you, John, I am always searching for support especially these days because the doctors will not give me anything for pain. I was on Gabapentin n it made me worse, very depressed and stupid. It also affected my eyesight and my hair is falling out. Not to mention I've gained 60lbs over the past 3.5 yrs. This past winter I just wanted to die so very much, my friend gave me some pain meds and now I've been taking them and at least I can move again. Though I still have a great deal of pain and can't do much, but at least I'm not confined to my bed or couch anymore all day. I can move. yeah!!!! Not to much though, because of the pinched nerves in my neck and back. Please know I've tried so many different drugs out there and the opioids are the only thing that help me. I think my nerve pain came from taking Viox n Bextra back in early 2000's those drugs were taken off the market, cause strokes, heart attacks n caused nerve pain, oh yeah the biggest of all people died from it.

sdemaria | @sdemaria | Jul 5, 2018

GM, yes I've heard about stem cell therapy. However, I never research myself . I would try it for sure.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 5, 2018

In reply to @johnbishop "If you live in the Minneapolis - St. Paul area, the Minnesota Neuropathy Association's (http://neuropathy-mn.org/) next..." + (show)

@johnbishop John,

Are there videos of these meetings that would be available or slide presentations?

Teresa

Nancy Banks | @banksnc49 | Jul 5, 2018

In reply to @swiss "have you or anyone heard of Stem Cell Therapy? Apparently there are US doctors, in patricular..." + (show)

Hi John. Do you know if the presentation from August 4 will be available online anywhere? I cannot attend but I would sure like to see the program or at least read about what was discussed. Thank you, Nancy Banks.

friendyshirley | @friendyshirley | Jul 5, 2018

In reply to @sdemaria "GM, yes I've heard about stem cell therapy. However, I never research myself . I would..." + (show)

I joined the http://www.foundationforpn.org and at the last check they said it was VERY expensive an s there is no proof that it works.

John, Volunteer Mentor | @johnbishop | Jul 5, 2018

In reply to @swiss "have you or anyone heard of Stem Cell Therapy? Apparently there are US doctors, in patricular..." + (show)

Hi Nancy @banksnc49 -- Unfortunately they normally don't record their presentations. We sometimes get handouts or if someone takes good notes I post them on the website - http://neuropathy-mn.org/. I am hoping to go and will try to take notes. If I do and they have any handouts I will try to post the information here on Connect.

John