Call for Mayo Clinic Leadership in Healthcare for Neuropathy

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

Aaron, thanks for the info and, yes, if you can find the name of the SLC doctor, I’d appreciate it. I have relatives up there so I could stay with them.

I emailed my Neurologist today requesting an increase of my Gabapentin dose to 1,200 mg., which I know is still low for some folks on this discussion group. I haven’t seen him in over a year so I don’t know if he’ll increase my Rx without a visit; which would be a waste of time and money. If he doesn’t, I’ll ask my PCP.

Thanks again, Joel

@swanson2023, there's the rub with peripheral neuropathy. Currently, treatments are limited. It sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic. Our physician experts have likely reviewed your case with their colleagues. Their review led them to determine that Mayo Clinic cannot offer any further treatment for you at this time. It is Mayo Clinic's goal to provide the best care each patient needs, however they do not want to have you incur additional costs for evaluation or travel if Mayo does not feel it can offer care that is different from what you’re already receiving.

In part, that is why we host this online patient community to offer support and so that Mayo Clinic patients and non-Mayo patients can share what works for them, trials and tribulations, and encouragement of acceptance.

You just reminded me of an older discussion in the Neuropathy support group that I found helpful:
- Acceptance: Anyone have difficulty accepting new limitations daily? https://connect.mayoclinic.org/discussion/acceptance

The name I was given was Dr. Kelsey Barrell: https://healthcare.utah.edu/find-a-doctor/kelsey-barrell . I know nothing about her other than someone on Reddit said she was a good doctor.

Letter to Mayo - Leadership for Providers’ & Patients' Sake
Hi everyone,
Your thoughts?
Considering Mayo Clinic’s:
1. Reputation, history, and mission to “work collaboratively" with people and
2. Mayo Connect and its participants’ experiences, knowledge, and insights revealed in their comments and stories,
this is to encourage a letter to Mayo Clinic’s upper management requesting Mayo Clinic’s leadership in healthcare.

Letter could include:
1. The considerations noted above,
2. Participants’ comments made on Mayo Connect, including those made in the following discussion titles:
* Hope - Healing Our Healthcare System for the People’s Sake
* Call for Mayo Clinic Leadership in Healthcare for Neuropathy
* Collaborative communication between and care by healthcare providers?
* AI in Healthcare - Hope, Fear, Need for Human Leadership,
3. Opportunities for improving the healthcare system the participants provide on Mayo Connect, and
4. A request for a response to the letter from Mayo Clinic’s upper management.

Thank you again Mayo Connect and participants!!
Steve

Hi Steve,
I moved your message about writing a letter to Mayo Clinic leadership to the previous discussion you wrote on the topic. This will help people interested in the topic to find all relevant messages in one place.

I understand your call to leadership. I would also like to point out that there is internal drive at Mayo Clinic to drive excellence in neurology in patient care, research and education as noted in my earlier response.

"Mayo Clinic in Rochester, Minnesota, Mayo Clinic in Phoenix/Scottsdale, Arizona, and Mayo Clinic in Jacksonville, Florida, rank among the Best Hospitals for neurology and neurosurgery in the U.S. News & World Report Best Hospitals rankings. Mayo Clinic Children's Center in Rochester is ranked the No. 1 hospital in Minnesota, and the five-state region of Iowa, Minnesota, North Dakota, South Dakota and Wisconsin, according to U.S. News & World Report's 2022–2023 "Best Children's Hospitals" rankings." Read more https://www.mayoclinic.org/departments-centers/neurology/sections/expertise-ranking/orc-20117079

Mayo Clinic Connect is primarily a place for patients to connect with other patients to give and get support for their personal health journies.

To stay up to date on the advances in neurology at Mayo Clinic and connect with leadership, I might suggest engaging in our social media channels:
- Mayo Clinic Neurology @MayoClinicNeuro https://twitter.com/mayoclinicneuro
- Mayo Clinic Twitter @mayoclinic https://twitter.com/MayoClinic

And our articles on our News Network:
- Mayo Clinic News Network (all categories) https://newsnetwork.mayoclinic.org/
- Mayo Clinic News Network (neuroscience) https://newsnetwork.mayoclinic.org/category/neurosciences/
- Mayo Clinic Medical Innovation https://newsnetwork.mayoclinic.org/category/medical-innovation/

Our leaders can also be followed on LinkedIn:
- Gianrico Farrugia, M.D., President and CEO at Mayo Clinic https://www.linkedin.com/in/gianricofarrugia/
- Christina Zorn, Chief Administrative Officer, Mayo Clinic https://www.linkedin.com/in/christina-zorn/

Colleen thank you.
The local providers near me do not collaboratively communicate and therefore should not be compared to those that do - Like at Mayo

When contacting Mayo requesting help - we talked insurance- mine ok. And I shared my need for help - not specifics. Please check out my two requests - name Steve Swanson