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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.

steeldove | @steeldove | Aug 13, 2018
In reply to @johnbishop "@marinelastef and @steeldove I thought you might be interested in reading some discussions for your upcoming..." + (show)
@johnbishop

@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

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Thanks, John. I've stayed in Rochester several times over the years since my first should replacement surgery in 2012. When there in the dead of winter I stay at the Kahler Grand which is connected via the underground walkway, and in nice weather I've stayed at the hotel near Soldier's Field (the one that's the home of the wonderful Twig's restaurant!) because I could walk to Gonda and walk in the lovely nearby neighborhood. One time I stayed at a not-very-nearby hotel that offered a shuttle, but I found that shuttle not very convenient.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Aug 13, 2018
In reply to @johnbishop "@marinelastef and @steeldove I thought you might be interested in reading some discussions for your upcoming..." + (show)
@johnbishop

@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

Jump to this post

Hi @steeldove, the Double Tree is another one connected by the skyway but I think it's more spendy. It is much nicer to be in Rochester in the summer and fall months than the winter, even with the subway and skyway between the buildings. I complain when I have to park in the Graham parking lot and not right across the street in the Damon parking ramp. It's just a little farther to walk but even with a bad knee it's good to walk. It just takes a little longer. Twig's is a nice restaurant with some great food.

Hope your appointment goes well and you can share when you get back.

John

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Bob Taub | @tucsonguy | Aug 13, 2018

Hello everyone,

I am new to this group. I am currently in the final stages of my physical for Chronic Kidney Disease. I am planning to get a kidney transplant. I am a type 2 diabetic since 1993. I've been treated for neuropathy for about five years. I take Lyrica and Tramadol for the pain mainly in my left leg and foot. When it flairs up it is debilitating. They tell me it is caused by diabetes. It is treated by my endocrinologist who I see every three months. I am hoping to get information from members of this group by sharing how they are being treated for all their complications.

REPLY
4 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 13, 2018
In reply to @tucsonguy "Hello everyone, I am new to this group. I am currently in the final stages of..." + (show)
@tucsonguy

Hello everyone,

I am new to this group. I am currently in the final stages of my physical for Chronic Kidney Disease. I am planning to get a kidney transplant. I am a type 2 diabetic since 1993. I've been treated for neuropathy for about five years. I take Lyrica and Tramadol for the pain mainly in my left leg and foot. When it flairs up it is debilitating. They tell me it is caused by diabetes. It is treated by my endocrinologist who I see every three months. I am hoping to get information from members of this group by sharing how they are being treated for all their complications.

Jump to this post

Hi @tucsonguy
As @johnbishop recommended, I moved your message to the main introduction discussion in the Neuropathy group so you can meet others who have neuropathy related to diabetes and chronic kidney disease. In addition to the members of this group, I'm also tagging @2011panc and @cehunt57 on this discussion as they too have experience with diabetes or CKD and transplant and may have some thoughts to your questions.

REPLY
allisonsnow | @allisonsnow | Aug 13, 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

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I was at the 30 day pain rehab program a few years ago so things may have changed but it seemed most focused on back pain especialy during orthopedic rehab sessions. it works at decreasing/eliminating need for pain meds. I will be at Mayo for 2 days but week before you, 21-22 I went for Fibro and knee, mostly fibro this was before the cancer.

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allisonsnow | @allisonsnow | Aug 13, 2018

@marinelastef
this last post was for marinelastef

REPLY
allisonsnow | @allisonsnow | Aug 13, 2018

@marinlastef

I found the pain rehab clinic to be very helpful for the most part some did not apply to me but you will have that when you have a program for a group that can encompass so many causes for pain

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2 replies
marystefy | @marinelastef | Aug 13, 2018

Hello @allisonsnow , thank you for answering. Can you be more specific regarding the program ? What do you mean by some did not apply to you ? I want to make sure that I’ll be prepared for this program . It’s my only hope . Thank you so much again !!

REPLY
2 replies
materk | @materk | Aug 13, 2018
In reply to @tucsonguy "Hello everyone, I am new to this group. I am currently in the final stages of..." + (show)
@tucsonguy

Hello everyone,

I am new to this group. I am currently in the final stages of my physical for Chronic Kidney Disease. I am planning to get a kidney transplant. I am a type 2 diabetic since 1993. I've been treated for neuropathy for about five years. I take Lyrica and Tramadol for the pain mainly in my left leg and foot. When it flairs up it is debilitating. They tell me it is caused by diabetes. It is treated by my endocrinologist who I see every three months. I am hoping to get information from members of this group by sharing how they are being treated for all their complications.

Jump to this post

That sounds like mine although I also have arthritis in shoulder and hand along with the Neuropathy . Feet and legs to knees involved. I too, take a lot is Shaklee Supplements
. What supplements have you found helpful ?

REPLY
marystefy | @marinelastef | Aug 13, 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 wish you good lock and I pray for you to have a good outcome from your visitation.
Thank you Allison !!

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