1. < Chronic Pain

Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

JK | @contentandwell | May 25, 2017
In reply to @johnbishop "Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be..." + (show)
@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information - http://bit.ly/2rzELLd

Here is a video that might be helpful - "What happens when you have a disease doctors can't diagnose" - TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

Jump to this post

@johnbishop John, you are so fortunate to live so close to such an amazing facility. Although I do not live close enough to Boston to have my PCP there I am happy that I am close enough to be able to go there for anything more specific. I regret so much not going there sooner so that the mystery of what I had could have been solved, it was difficult to go for so long not knowing what was wrong, waking up every morning afraid that I might have an HE episode that day. Thankfully though, at this point it is all history and I am doing fabulously, only glitch being side drug side-effects.

"House" was great, one of the shows I miss.
JK

REPLY
michele deville | @micheledeville | May 25, 2017
In reply to @johnbishop "Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be..." + (show)
@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information - http://bit.ly/2rzELLd

Here is a video that might be helpful - "What happens when you have a disease doctors can't diagnose" - TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

Jump to this post

Hi John
Thanks so much for your response. I truly appreciate your insight and suggestions. I will look at the links and I am pursuing getting an appointment for my daughter at the Mayo. There are a lot of physicians at Mayo - I am wondering if anyone of the site has any suggestions of a good physician to start with or someone that they have had good luck. Thanks again and have a wonderful holiday weekend!

Michele

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 26, 2017
In reply to @johnbishop "Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be..." + (show)
@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information - http://bit.ly/2rzELLd

Here is a video that might be helpful - "What happens when you have a disease doctors can't diagnose" - TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

Jump to this post

Hello Michele (@micheledeville),

I think when you make your appointment they will setup a series of appointments based on the symptoms you tell them so that they can help you. I am tagging a few folks that may have a better insight and can give you some information on what to expect with your visit/appointment - @cynaburst @dawn_giacabazi @IndianaScott @katemn @kariulrich @kdubois @rosmarya @colleenyoung @jamienolson.

Please let us know when you get your appointment set up and you have more questions.

John

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 26, 2017
In reply to @johnbishop "Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be..." + (show)
@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information - http://bit.ly/2rzELLd

Here is a video that might be helpful - "What happens when you have a disease doctors can't diagnose" - TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

Jump to this post

Hi Michelle,
Here are a few links that may help you with any questions you might have about an upcoming appointment at Mayo Clinic.

A typical visit:
http://mayocl.in/2r3YzUw
Frequently asked questions about visits to the Rochester Mayo Clinic:
http://mayocl.in/2iqtsjl
Sharing Mayo Clinic - Stories from patients, family, friends and Mayo Clinic staff
http://mayocl.in/2rolpJp
John

REPLY
oldkarl | @oldkarl | May 26, 2017
In reply to @johnbishop "Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be..." + (show)
@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information - http://bit.ly/2rzELLd

Here is a video that might be helpful - "What happens when you have a disease doctors can't diagnose" - TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

Jump to this post

for @micheledeville When I went to to Mayo-AZ, things were very different. I went there having spent many days and nights trying to learn as much as I could about amyloidosis, having had a MD give me what he called an "informal" Dx. I at least had a place to start. Anyway, I was at May four (4) months, and it was only in the last few days that amy... was given any credence. The docs spent the rest of the time looking for any other excuse they could find for me having the symptoms and signs. They even sent some blood and biopsies to Rochester. The found a few things, but nothing that would excuse the situation. In the last few days the docs showed me a list of cancers, but nothing which would impact the amy. Only on the last two or three days did I get to see a hematologist, who knew next to nothing about amy. Only after I had been back home for a few months did I get a report from Rochester that said "We cannot rule out AL (light chain) amyloidosis, Gelsolin, Cystatin-C, Apolipoprotein, or other systemic, primary, familiar" amyloidosis diseases. In other words, the waffling-around by Mayo for 90% of the visit cost me several thousand dollars, with very little in return. So I say, be careful. You have to protect yourself at all times.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 26, 2017
In reply to @johnbishop "Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be..." + (show)
@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information - http://bit.ly/2rzELLd

Here is a video that might be helpful - "What happens when you have a disease doctors can't diagnose" - TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

Jump to this post

Thanks for the tag, John.
@micheledeville, John has given you some great things to read about getting an appointment at Mayo. Should you wish to inquire about an appointment, please fill in the online form here: http://mayocl.in/1mtmR63

There are several great discussions in the Visiting Mayo Clinic group about getting your first appointment and preparing for your visit. Check them out. Ask questions of people who have been there:
- Visiting Mayo Clinic http://mayocl.in/2bGLTKj

REPLY
Nelsonpowell | @nelsonpowell | May 29, 2017

I am nelsonpowell,constant pain all day iwant to know if anyone has had a wire inserted in ther back forpain

REPLY
6 replies
Nelsonpowell | @nelsonpowell | May 29, 2017

Doctor wants to insert a wire in side my spine and transmitter out side for 7 day trail

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 29, 2017
In reply to @nelsonpowell "Doctor wants to insert a wire in side my spine and transmitter out side for 7..." + (show)
@nelsonpowell

Doctor wants to insert a wire in side my spine and transmitter out side for 7 day trail

Jump to this post

Welcome to Connect, @nelsonpowell.
I'm wondering if you are talking about an implantable neurostimulator, sometimes called a spinal cord stimulator? We have several members who have experience with this chronic pain treatment, including @ladyjane85, @jimhd, @medic7054 and others. You may wish to read their comments as well as many others on this discussion:

- Has anybody had an implantable neurostimulator for chronic pain? http://mayocl.in/2aOZaR0

Nelson, when will you start the trial?

REPLY
PinkPain51 | @pinkpain51 | May 29, 2017
In reply to @nelsonpowell "I am nelsonpowell,constant pain all day iwant to know if anyone has had a wire inserted..." + (show)
@nelsonpowell

I am nelsonpowell,constant pain all day iwant to know if anyone has had a wire inserted in ther back forpain

Jump to this post

Yes, I had the trial SCS stimulator done and it did not work for me but the trial is relatively simple and painless. I wish you the best of luck and any specifics I can answer.
Kristine

REPLY
View MoreView Less
Please sign in or register to post a reply.