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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@johnbishop

Hi @marinelastef -- You are welcome for the updates. Unfortunately I'm just a passenger on the stem cell treatment research journey. It's really interesting and promising stuff but for neuropathy I do not think it's close...just my opinion based on what I've read and researched. I think when we see clinical trials followed by clinical studies on stem cell treatment for repairing or regenerating nerve cells that will be the first signs of real hope. I believe I heard the speaker at the meeting say that all of the big pharma money for research is going into stem cell treatment clinical trials for cancer because it has the greatest promise.

Who knows though...that's why I keep reading, searching and learning whatever I can. Also helps me meet my daily goal - learn one new thing every day. What's great about that is I am an old guy and sometimes the new thing I learn is something that is not really new. I just forgot I had read it before ☺.

Have a great weekend!

John

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Replies to "Hi @marinelastef -- You are welcome for the updates. Unfortunately I'm just a passenger on the..."

@johnbishop , if I’m not mistaken, Mayo already has clinical trials on repairing nerve damage. I found out that the trail is formed by 10 patients with nerve problems. That should tell us that they have the formula but not everyone is privileged to try it. However, I think that people with neuropathic trauma have no guilt in their illness, therefore they deserve what was taken away from them to be granted .

Thank you John for being our advocate !!

Hi @marinelastef, I think the clinical trial you are talking about is a little different than small fiber peripheral nerves...but I'm not expert and have no medical training or background. Here's what I found but it doesn't mention any clinical trials for PN stem cells.

Center for Regenerative Medicine
-- https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/neuroregeneration

Would love it if there was a clinical trial going on in Rochester for peripheral neuropathy.

John

@johnbishop , and one more thing that crossed my mind . If stem cells show great results for patients with cancer, stroke and so forth, why the idiopathic neurophaty can’t be considered a trauma to nerves due to ether the environment or medications ? In fact, cencer patients develop neurophaty because of their chemotherapy, no ???

Maybe I’m wrong, it was just a thought !! Happy weekend !!

Hello again @johnbishop , personally my neurophaty is not peripheral necessarily. I developed nerve problems in areas where I had the nerve blocks, steroid injections, left ear damage and septum surgery, and from there spreads down my arm, chest, feet . So, how do you call such neurophaty ???

Thank you !!

Hi @marinelastef, this is one of the best explanations of small fiber peripheral neuropathy that I have found. I really have no medical background or training but I'm guessing nerve damage is nerve damage no matter what the medical term is.

Easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:
-- https://youtu.be/8nrv7lRvvwU

Peripheral Neuropathy Fact Sheet
-- https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

John

Thank you @johnbishop , very informative, however, mine starts in the left side of head , left ear, nostrils, left side of neck and spreads. I don’t know if it’s called peripheral or trauma like neurophaty. Right know I’m having a bad flare up because the massage I gave myself last night . I’m on fire and can’t take the pain and “zzzzz” noise that accompanies the burning

I appreciate your help very much !!
Thank you John !!!

I am way out of the loop here John so I shouldn't speak out of turn but one of my Dr.s told me it didn't make a difference when repairing nerves (of course he was an oncologist ) and why would/should anyone attach guilt (as per marinelastef noted) to ANY disease?? and yes cancer patients develop neuropathy that is how I got mine side effects of two drugs I received. Kind of lumped a few things into one response but this is what my computer opened up two this beautiful morning (really hot and HUMID) but I am still here so it is beautiful!
gotta get going to church!!!!

Good morning @allisonsnow, I hope she wasn’t attaching guilt. I think she’s just searching for answers like the rest of us. I am hoping that each of us finds something that makes the pain go away without any nasty side effects. It was hot and humid here yesterday and looks to be about the same today. That said it is like you say a beautiful day in the neighborhood. Hoping all our PN and chronic pain friends find some relief and stay cool today.

John

Hello @johnbishop and @allisonsnow . Im really sorry if my message frustrated someone, it was not intestinal, and I would never do something like that . It’s just overwelming to be 24/7 in pain without any drug or procedure that works to alleviate it. I apologize again if I was misunderstood, I respect you all and my heart goes out to any of us who has to deal with nerve pain or any other disease.

Kind regards!!
Marinela

don't worry about it we all have our own way of speaking