health advocate

Posted by melindanorman @melindanorman, 6 days ago

I was wondering if anyone has ever been helped by an actual health advocate? I was a patient at Mayo in Jacksonville for about 1.5 years and wasn't getting answers, wasn't agreeing with my treatment plan, and had a very self-righteous dr. I asked the office of patient experiences for a dr change and they dropped me as a patient. The crazy thing was I still had several appointments set up for further testing. I live in a small town with horrible health care. I've since traveled to NYC and south Florida to see 'experts' as well as trying to see local doctors. I've been denied care several times because I was told "If Mayo can't help you, how can we?" I think it's ridiculous that I'm being denied care without even being seen once. My health issues haven't changed and no once knows how to help me. I'm doing a search on other teaching hospitals to see if I should try to travel and visit one (including Mayo in Minnesota). I also don't know if I tried to go back to Mayo in Jacksonville if they would see me and place me with a different GI dr. (It's been almost a year now since they dropped me as a patient). I don't trust them though because Office of Patient Experience makes you think you can be open and honest and they'd respect you as a patient, but basically they just tattled and lied about the dr. I have proof of things said because we did a lot of video chats, but they don't care. I just want to be seen by a respectable doctor who is willing to try things and treat me. Any help?

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Colleen Young, Connect Director | @colleenyoung | 6 days ago

Hi @melindanorman, I'm sorry to hear that since posting your update in February https://connect.mayoclinic.org/comment/1009374/, you remain on the quest for answers. This must be exhausting and frustrating. What fortitude you have to travel and seek care at a teaching hospital, including submitting an appointment request at Mayo Clinic in Minnesota.

In your original post, you talk about having unmitigated pain:
- Stomach pain undiagnosed for 3.5 months https://connect.mayoclinic.org/discussion/stomach-pain-undiagnosed-for-3-5-months/

I'm wondering if you have considered a pain rehab option and explored central sensitization syndrome. @rwinney and other graduates of the Mayo Clinic Pain Rehabilitation Center explain here:
- Central sensitization syndrome and treatment?
https://connect.mayoclinic.org/discussion/central-sensitization-syndrome-and-treatment/
See all CSS-related discussions: https://connect.mayoclinic.org/search/discussions/?search=central%20sensitization%20

I hope this might open another avenue of possibility for you.

Rachel, Volunteer Mentor | @rwinney | 5 hours ago

Hi there @melindanorman. I'm sorry you've had poor experiences and are frustrated. It must feel exhausting traveling to different teaching hospitals and feeling like you're coming up empty. I very much have empathy having gone through my own stuff.

I have a question for you... from all of your experiences and travels, what health conditions have been ruled out? It's helpful to narrow down what you don't have while chipping away at the process of finding out what you may have.

Have you been able to research your symptoms? If so, what are your feelings about your body and what you're going through , are you searching for any specific "new things" or "different treatments" (as you mention) from doctors that you think would be helpful in symptom management?