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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 | Aug 12, 2018
In reply to @johnbishop "Hi @marinelastef -- You are welcome for the updates. Unfortunately I'm just a passenger on the..." + (show)
@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

Jump to this post

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

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Aug 12, 2018
In reply to @johnbishop "Hi @marinelastef -- You are welcome for the updates. Unfortunately I'm just a passenger on the..." + (show)
@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

Jump to this post

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

REPLY
marystefy | @marinelastef | Aug 12, 2018
In reply to @johnbishop "Hi @marinelastef -- You are welcome for the updates. Unfortunately I'm just a passenger on the..." + (show)
@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

Jump to this post

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
Mentor
John, Volunteer Mentor | @johnbishop | Aug 12, 2018
In reply to @johnbishop "Hi @marinelastef -- You are welcome for the updates. Unfortunately I'm just a passenger on the..." + (show)
@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

Jump to this post

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

REPLY
marystefy | @marinelastef | Aug 12, 2018
In reply to @johnbishop "Hi @marinelastef -- You are welcome for the updates. Unfortunately I'm just a passenger on the..." + (show)
@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

Jump to this post

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

Thank you !!

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Aug 12, 2018
In reply to @johnbishop "Hi @marinelastef -- You are welcome for the updates. Unfortunately I'm just a passenger on the..." + (show)
@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

Jump to this post

Don't be nervous Marinela. Think glass half full!! You never know what tomorrow may bring.

REPLY
steeldove | @steeldove | Aug 12, 2018
In reply to @johnbishop "Hi @marinelastef -- You are welcome for the updates. Unfortunately I'm just a passenger on the..." + (show)
@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

Jump to this post

Marystefy, I too have Mayo appointments in Rochester on August 29 and 30 for appointments in Spine Center, Neurology, and Orthopedics. I'll be driving from Springfield, Missouri, and plan to arrive on either Monday, 8/27 or Tuesday, 8/28. Will you be staying in Rochester? If so, where?

REPLY
marystefy | @marinelastef | Aug 12, 2018
In reply to @johnbishop "Hi @marinelastef -- You are welcome for the updates. Unfortunately I'm just a passenger on the..." + (show)
@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

Jump to this post

Hello @ steeldove. I’m not sure yet which hotel I’ll be choosing. Lest time I stay at Rochester motel, pretty nice and clean, and the rate is abordable . Maybe we will meet if possible.

REPLY
marystefy | @marinelastef | Aug 12, 2018
In reply to @johnbishop "Hi @marinelastef -- You are welcome for the updates. Unfortunately I'm just a passenger on the..." + (show)
@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

Jump to this post

Thank you John for the encouragement !!

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Aug 13, 2018

@marinelastef and @steeldove I thought you might be interested in reading some discussions for your upcoming trip to Rochester Mayo Clinic. There is a group Visiting Mayo Clinic that has some helpful discussions.

Here's the link to the Visiting Mayo Clinic Group:
-- https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/

Here are a couple of discussions that may be helpful:

What are your accommodation recommendations when coming to Mayo?
-- https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/

Hi I'm New Here. Going To Be Visiting Mayo Clinic
-- https://connect.mayoclinic.org/discussion/hi-im-new-here-going-to-be-visiting-mayo-clinic/

John

REPLY
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