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?

@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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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

REPLY
@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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@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 !!

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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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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 !!

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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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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:

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

John

REPLY
@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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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 !!!

REPLY
@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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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!!!!

REPLY
@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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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

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Good morning,
I have a quite sudden neuropathy in my feet recently. Started in toes, now in entire feet. Not diabetic related. But I do have minor optic nerve swelling. I am thinking of driving to Jacksonville and trying to see neurologist as a walk-in knowing I may have to wait a day or two. But according to an earlier post…we will fit in walk-ins as they can. And also website says they can do in a few days what might take months in standard practice…of course I feel this is urgent and advancing quickly. Any advice on walk-ins to Neville clinic? With thanks, Kim I f
Have blue cross insuance

Liked by marystefy

REPLY

Hi @kimwalker, Welcome to Connect. I am not familiar with the Neville clinic in Jacksonville. I would recommend calling first even if you plan to try and get an appointment as a walk-in. If you want to seek an appointment at the Mayo Clinic Jacksonville Campus, here is the page with the appointment contact number and information:

https://www.mayoclinic.org/patient-visitor-guide/florida/appointments

Do you have someone that can drive you? If you are having minor optic nerve swelling, is it something that can affect your driving?

John

REPLY
@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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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

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

REPLY
@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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Hi Marinela @marinelastef, no need to apologize. I think we've all been where you are now and had that feeling. I hope you have had a little relief from the pain. Do you have any appointments setup with your doctor?

Keep asking questions and advocating for yourself!

John

Liked by marystefy

REPLY
@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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Hello @johnbishop , the only appointment coming up is the pain rehab program at Mayo, Rochester. I’m not sure what to expect from it but hopefully they will be able to see what I’m going through, and how I’m at my worst pain . I was diagnosed with intractable pain, neuralgia of the head, neurophaty, and all started after receiving the blocks. I will be in Rochester on August the 27th.
Keep you all posted .

Thank you again for caring !!

REPLY
@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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Hi @marinelastef
I hope they can figure out something for you that works. Thank you for keeping us posted!
John

Liked by marystefy

REPLY
@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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I’m so nervous @johnbishop , because it’s my only hope .

Thank you !!

REPLY
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