Call for Mayo Clinic Leadership in Healthcare for Neuropathy

This was an ad in a recent ASU publication. If only it were true. I’m at a loss as to where to turn since being rejected by the Mayo Clinic in Phoenix. I was in Portland for Spring Break to spend time w my 87 year old mom and go through some of her old papers. She’d written some family stories in 1948 as a school project while growing up in Minnesota and one story was about her dad taking one of her sisters up to the Mayo; as she had a peanut stuck in her throat.

Colleen thank you again!!

Searching the web, after I was told I had neuropathy, I found lots of information about the cause of, how to live with, and, yes, how to heal neuropathy.

Includes information on Mayo Clinic’s website. Cause part.

I find myself needing to inform my healthcare providers about what I find on the internet.

In lieu of them telling me about the cause, living with, and healing neuropathy.

I now need to start asking my several sources of healthcare to start communicating with one another - to authentically collaborate. I’m managing and advocating for my healthcare- not a healthcare professional.

A story I hear occurs too often in healthcare today.

Still searching for a professional advocate manager for my healthcare.

If anyone knows of one in the Southwest - or anywhere - please let me know.

Thanks again
Steve

David - grateful for your sharing
Be encourage to speak !!

Hopefully Mayo Clinic, and other prominent providers of healthcare, will also speak and then act to lead to change healthcare to focus on people first.
My experience in business reveals building relationships first to improve communication, build trust, and solve problems together, improves business.
Steve

Joel Fritzler - Thank you for sharing your story, need and "if it were only true".
Hope Mayo will help us understand.
Steve

I am sorry you were rejected by Mayo in AZ - I know the feeling as a headache specialist declined my case in 2020, instead saying I should go to a pain clinic. I rejected that outright as all that was known at the time is I didn't have MS, there was no large fiber involvement, and steroids helped control the symptoms.

I did my best to control my symptoms but that started not working so well back in November. I finally consented to see my primary care doctor in March (also at Mayo - have been her patient since before she moved to Mayo) and ask for one or more of LDN, medical marijuana, or high-dose steroids for an extended period of time. I was not looking for a consultation with neurology.

Before the appointment, I shared with her a paper that described my symptoms spot on (just to reinforce I am not crazy) and that spurred her to a) run some testing outlined in the paper, and b) suggest I needed a neurology consult again. I said fine but only if it is with Dr. Brent Goodman who is basically impossible to see - I at least wanted to get rejected by someone who deals with peripheral neuropathy. I was actually put on a waiting list and was surprised to get a call about an appointment open due to someone else cancelling. I took it. Dr. Goodman spent an hour-and-a-half during that visit and came to the same hypothesis that is in the paper I shared with my PCP.

Will he find the source of my neuropathy? Who knows? Will he come up with a treatment plan that allows me to still work? Who knows? In the end I am grateful he listened and wants to try an find the needle in the haystack which is all I ever wanted someone to do. I don't expect a miracle cure and assume I will have this pain until the end of my days but knowledge is key to understanding how to treat that pain, not just mask it.

I guess if you are still reading this, then the message is that even though a door might have closed, it doesn't mean it will stay closed forever, even if you aren't looking for it to open. I hope you find a good doctor, inside Mayo or outside of it. I remember there was supposed to be a good doctor in Salt Lake City, UT but never tried that option - I can try and find the name if you are interested.

-Aaron

You may also wish to look into the Mayo Clinic Care Network to find care closer to home.

The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. See the member hospitals here:
– Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

Colleen
Thank you !!!
Link said
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As I recall, my search to be with Mayo with my insurance company, started in Arizona and then to Rochester .

Just searched for Mayo in Texas on web - Did not see a location.

Thanks again for getting back with me

FYI
Searching for collaborative healthcare services near home, I recently discovered a CMS - AOC and have met with administrators and discussed collaboration.

Hopeful

However the stories from friends who are patients and physicians, much like those shared on Mayo Connect, reveal the critical need to heal the healthcare system.
For our sake and the future’s.
Need as much leadership as possible.

Oops. My apologies for posting an old link. I updated the link above. Here is the correct one:
– Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

Colleen
Thank you again!
Methodist in the Dallas area looks familiar
For some reason, sorry to not remember, we applied to Rochester
Again
THANK YOU!!

Aaron
Grateful - Thank you for sharing
A story and message all, including our children, should hear.
The healthcare system we give to the future must overcome the challenges you, and so many, share.

Thank you again -- "The message is that even though a door might have closed, it doesn't mean it will stay closed forever, even if you aren't looking for it to open. "

We can and must help open doors for people, us too.
Please continue sharing so all can hear!!
Steve