Getting a Diagnosis for Chronic Pain

Posted by sceman00 @sceman00, Aug 24, 2021

I have a dear friend with undiagnosed chronic pain. She lives in WI. She has seen many different specialists in the area, however there is no continuity or coordination across the Drs. I am wondering if a trip or two to Mayo Clinic in MN with the sole purpose of finding a diagnosis and identifying treatment options is possible. How does someone make this happen? Who coordinates the overall visit and diagnosis? I would imagine someone decides which specialists and/or tests will begin narrowing the list of potential diagnosis.

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

Hello @sceman00, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I am a Rochester Mayo Clinic patient. I recently read a story about Mayo Clinic's multidisciplinary team approach which I thought best explains how it works.

— The Mayo Clinic’s team approach saved my life; now I use it to build great software: https://www.scmagazine.com/news/devops/multidisciplinary-teams-saved-my-life-now-i-use-them-to-build-great-software

While a person can self-refer to Mayo Clinic, it can be helpful to have a physician referral, as they can easily transfer clinical findings, reports, etc. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@roch and other members may also have some suggestions or information to share with you. Has she tried contacting Mayo Clinic Rochester?

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@johnbishop

Hello @sceman00, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I am a Rochester Mayo Clinic patient. I recently read a story about Mayo Clinic's multidisciplinary team approach which I thought best explains how it works.

— The Mayo Clinic’s team approach saved my life; now I use it to build great software: https://www.scmagazine.com/news/devops/multidisciplinary-teams-saved-my-life-now-i-use-them-to-build-great-software

While a person can self-refer to Mayo Clinic, it can be helpful to have a physician referral, as they can easily transfer clinical findings, reports, etc. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@roch and other members may also have some suggestions or information to share with you. Has she tried contacting Mayo Clinic Rochester?

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She hasn’t yet, but this is exactly the information I was looking to show her. I think the fact that there is travel and insurance concerns is daunting to her. I think the benefits will far outweigh the costs. Thank you!

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I am also a Mayo Clinic (Rochester, MN) patient for many years now. About 15 years ago I started to have terrible back pain, and I went from chiropractors, pain specialists, and any possible local doctor who might be able to help me, and nothing changed. I finally went to the Mayo, and was very extensively checked up, and ended up with a diagnosis of some kind of spinal stenosis. I got surgery and after healing out (a very slow process), I was mostly pain free.
Originally, i did not know who to see, and I started out with internal medicine, and they arranged the visits with all the other groups.

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I just read where an autoimmune deficiency may cause inflammation to body tissues, pain, depression, and even mental fuzziness. Is anyone being successfully treated for this ailment?

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@kenc

I just read where an autoimmune deficiency may cause inflammation to body tissues, pain, depression, and even mental fuzziness. Is anyone being successfully treated for this ailment?

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Hi @kenc, I think a lot of us have been successfully treated for an autoimmune deficiency considering there are many different conditions. Prednisone returned my PMR to remission and I hope it stays there 🙂. Mental fuzziness can also be due to some of the medications being used to treat some of the conditions. Here's some information that talks a little about it.

"Is there a cure for autoimmune deficiency? – Treatments can't cure autoimmune diseases, but they can control the overactive immune response and bring down inflammation or at least reduce pain and inflammation." — Autoimmune Diseases: Types, Symptoms, Causes, and More: https://www.healthline.com/health/autoimmune-disorders

Are you currently on any treatments but still having some pain and inflammation?

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Much appreciated. Thank you. And yes, still have pain.

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@lindes

I am also a Mayo Clinic (Rochester, MN) patient for many years now. About 15 years ago I started to have terrible back pain, and I went from chiropractors, pain specialists, and any possible local doctor who might be able to help me, and nothing changed. I finally went to the Mayo, and was very extensively checked up, and ended up with a diagnosis of some kind of spinal stenosis. I got surgery and after healing out (a very slow process), I was mostly pain free.
Originally, i did not know who to see, and I started out with internal medicine, and they arranged the visits with all the other groups.

Jump to this post

In reply to @lindes… your comments regarding your back pain has really struck me at this moment in my life. In my opinion, I have an ineffective local medical resource although I pushed and got an MRI that revealed significant issues at the L4-5 areas and L5-S1. I have an appointment at Mayo at the spine center on 10/15/21, but at previous appointments they were brief with little follow up. Your suggestion about internal medicine may be an excellent suggestion to give to the doctor at Mayo or maybe now, he will begin a more thorough exploration and treatment plan as the pain in my back, hips, and lower legs have increased notably. Thank you for sharing your story.

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@migizii

In reply to @lindes… your comments regarding your back pain has really struck me at this moment in my life. In my opinion, I have an ineffective local medical resource although I pushed and got an MRI that revealed significant issues at the L4-5 areas and L5-S1. I have an appointment at Mayo at the spine center on 10/15/21, but at previous appointments they were brief with little follow up. Your suggestion about internal medicine may be an excellent suggestion to give to the doctor at Mayo or maybe now, he will begin a more thorough exploration and treatment plan as the pain in my back, hips, and lower legs have increased notably. Thank you for sharing your story.

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Internal send me to the Department of Physical Medicine and Rehabilitation, and the doctor there arranged for all kinds of different tests, etc. And it was eventually decided that I needed spinal surgery, which was done by a neurosurgeon.

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When I have my appointment in the Spine Care dept., I may mention this department as an option to determine what to do. Thank you so much for you reply😊😊😊

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@lindes

Internal send me to the Department of Physical Medicine and Rehabilitation, and the doctor there arranged for all kinds of different tests, etc. And it was eventually decided that I needed spinal surgery, which was done by a neurosurgeon.

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What spine surgery did you get? And how has it worked for you? Did you get pain relief?

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@johnbishop

Hello @sceman00, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I am a Rochester Mayo Clinic patient. I recently read a story about Mayo Clinic's multidisciplinary team approach which I thought best explains how it works.

— The Mayo Clinic’s team approach saved my life; now I use it to build great software: https://www.scmagazine.com/news/devops/multidisciplinary-teams-saved-my-life-now-i-use-them-to-build-great-software

While a person can self-refer to Mayo Clinic, it can be helpful to have a physician referral, as they can easily transfer clinical findings, reports, etc. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@roch and other members may also have some suggestions or information to share with you. Has she tried contacting Mayo Clinic Rochester?

Jump to this post

I trìed to get a. appointment through Mayo Connect. I did get a return phone call with some disturbing news. Since I'm on Medicare and I have a PPO supplement, I was told the Mayo does not accept "new government-paid patients" if they haven't been to the Mayo in 3 years. So much for the Mayo slogan about the patient coming first and all that. My husband is a Mayo patient and he's been with the Mayo for over 20 years now. At one point he received a letter stating he couldn't see a regular PCP unless he would forego his Medicare benefits and become a self-pay for the PCP portion of his care. What do you bet that Mayo receives government funding for their projects yet won't help patients on Medicare. If someone finds this incorrect, try and make my appointment. Thanks.

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@blueeyez

I trìed to get a. appointment through Mayo Connect. I did get a return phone call with some disturbing news. Since I'm on Medicare and I have a PPO supplement, I was told the Mayo does not accept "new government-paid patients" if they haven't been to the Mayo in 3 years. So much for the Mayo slogan about the patient coming first and all that. My husband is a Mayo patient and he's been with the Mayo for over 20 years now. At one point he received a letter stating he couldn't see a regular PCP unless he would forego his Medicare benefits and become a self-pay for the PCP portion of his care. What do you bet that Mayo receives government funding for their projects yet won't help patients on Medicare. If someone finds this incorrect, try and make my appointment. Thanks.

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@blueeyez I had a similar experience a few years ago when I tried to make an appointment at the Mayo Clinic. I called in December and was told that there was only a two week wait for an appointment with a neurologist. In January my insurance changed to Medicare. I called Mayo on January 2nd to make an appointment with a neurologist and was told, “The schedule is full.” I was encouraged to see my own doctor or doctors in my area who were affiliated with Mayo. No thanks.

I googled to see if the Mayo Clinic was for profit and this is from their website:
Mayo Clinic is a nonprofit organization committed to clinical practice, education and research, providing expert, whole-person care to everyone who needs healing.

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