Can't get an appointment: Any tips on what to do?

@cljohnson25 Hello,
I know it’s frustrating. You are never so impatient in life for anything except your health. I got into Mayo Rochester fairly easy because of my complex heart issues- the appointment wait time was lengthy though once accepted. Now I have moved to Jacksonville and thought how great it would be to have cardiology and internal medicine docs all at the same place- I called last Sept to try an establish care- I was told at that time I was behind literally 1000 people on a wait list- so I added my name to the least and waited. Now it’s January and still no call- so I tried to get an appointment again and was told now wait list is closed, basically call somewhere else. I reminded them however, I was supposed to be on the wait list- I was finally given an appointment for down the road. It was very disappointing- especially because at my last cardiology appointment I also was found to have an adrenal mass. I think mine is probably fine and not causing issues but it is something I need to follow up on. My point is keep being persistent. Try and keep following up with the people at Mayo if that’s where you want to go. Right now because of COVID our healthcare is just reached at point of exhaustion, my husband is a hospital physician and being on the side of a patient and provider I have seen this. While you wait for Mayo though- there are so many wonderful providers out there who could start your treatments or work up’s. In fact sometimes with more tests and information it may be easier to get the attention of the Mayo doctors. Even for my heart- I have to have all kinds of scans and tests then with those results I got my appointment. Many university centers are great places to seek care. When I was going to move to Oregon last year I looked into OHSU and found they have a great institution that I would have felt very comfortable with my cardiology follow up. And finding a good endocrinologist could help with the adrenal mass-from what I have been told they are fairly common so I am seeking care for mine outside of Mayo. I know none of this was probably much help, but there is hope. Do some research and find places that focus or specialize in your needs and keep reaching out to them all. Best wishes
Jeane

@jeanern01 That's very insightful of you to share what you did to get care! And the things your husband shares with you about the overloaded schedules certainly back up what we are seeing, as patients.

I truly am not trying to sound disheartening here, @cljohnson25, or not serious. Mayo Clinic is considered by so many to be the gold standard of medical research and care. And because of the factors Jeane mentioned like overwhelming challenges with exhaustion and overwork, there truly are only so many people that can be seen at the level of care Mayo keeps! A good teaching hospital in your area, usually associated with a university, can be a place to start your care. If you have friends or acquaintances who have been satisfied with certain doctors handling their care, perhaps you can research having that same medical professional helping you?

Finding medical care these days takes a lot of negotiating, it seems. And when we aren't feeling well, it sometimes feels like we are hitting our head against a wall. I hope you can choose to be gentle on yourself, and seek out a starting place. Will you let me know what you think of this idea?
Ginger

My PCP referred me to the University of Michigan, they referred me to Central Michigan University and they tried referring me to Mayo but it did get denied yesterday. Defeated. If this is what life is going to feel like, I don’t even want it.

@cljohnson25 Hi and Welcome to connect, I'm not familiar with your particular medical issue but thought I would answer your question about Mayo referral.
Myself I was pretty sick with Vintricular Tachacardia or basically a rapid heartbeat. My Cardiologist was the one that referred me and after a failed 8th ablation felt I was a candidate for a heart transplant so I actually was transferred from a local hospital to Mayo Phoenix by ambulance. Initially just for an evaluation but my heart was getting worse by the day and after an ER visit was re-admitted after some initial testing. I ended getting the transplant 7 weeks later and never left the hospital that whole time.
So bottom line it was my specialist who got me in the first time. So maybe try going thru a specialist in your particular medical issue. I'm wondering tho as I've heard some universitie Medical Hospital are also great places for more indepth evaluations? Was the one you visited able to help?
Blessings

I’m so happy to hear it worked out for you! My issues seem to be all endocrine. Nodules on my thyroid and adrenal gland. I was diagnosed with Hashimoto’s at 16, I’m 51 now and a new auto immune disorder seems to pop up every month. The University Hospitals here can’t quite figure it out. And it’s something new every day. The scariest part is the affects it’s having on the brain. I got confused 3 times while driving only 6 miles away, I couldn’t remember where I was going or how I got there. This was my PCPs first referral so now my Endocrinologist is going to appeal in hopes of better results. I still have hope!

That's hopeful news coming from the Endocrinologist should help I would think. Don't give up what's that old saying squeaky wheel gets the oil. Stay positive and I know how hard that can be.

Is there an appeal process for a denied appointment. I have been deemed a "medical mystery" by several specialists (some second and third opinions) after 5 years and hundreds of tests. Symptoms are worsening and while we can find concrete evidence on an issue (elevated inflammation markers, high white blood cell count, hemophagocytosis in bone marrow and so on) we can't identify an ACTUAL cause or causes most likely. Many of my symptoms have been life long and unaddressed due to living in an abusive home with no medical care. Now my doctors are literally out of test...I mean we have absolutely no plan other then refer to to some place that knows more. Unfortunately even with that I was denied an appointment at Mayo. Any suggestions?

Hi @hsiller, welcome.

It sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic. Our physician experts have likely reviewed your case carefully. However, the appointment denial is more likely an issue of capacity. Some of our departments, especially General Internal Medicine, receive more appointment requests than we have capacity to accept.

You'll notice that I moved your message to this existing discussion (https://connect.mayoclinic.org/discussion/cant-get-an-appointment/) where fellow Connect members share tips on how to get an appointment at Mayo Clinic after being initially denied. You may wish to read through the past posts.

That makes sense and I'm completely understanding but what if it's the only option I have? I really wish I was exaggerating when I said my doctors were out of ideas. We know the issue lies in the hematology, neurology and rheumatology areas and likely related to autoimmune, autonomic or blood condition but after years we can't nail it down. Reading other posts I'm not finding anything about what I do now.

Did you self refer or did your physician or specialist submit the referral for you?