Good luck, and I hope you're able to get an appointment at another facility.

I do understand as they like to say: "Unfortunately, there are more patients seeking appointments than Mayo is able to offer." It's just the appointment request/referral/self-referral process that baffles me. There are people who are just regular primary care patients (how does that work??) or don't even admit to having an extremely complex or serious condition and are patients. And then there are people like us with reams of medical records and recommended to the seek more comprehensive and experienced care at Mayo. I think that's the most frustrating part, the apparent randomness of it and lack of transparency and clear guidelines for referrals. After I went through multiple physician and self-referrals, I ended up getting on a waiting list for an appointment by simply calling the public number for the clinic where I wanted to be seen.

I've also been seen at both Rochester and Jacksonville, and I can say with certainty that the communication and coordination of care (or lack thereof) for my Jacksonville workup has been unbelievably bad.

It almost feels like there needs to be a support group for people who aren't able to get an appointment at Mayo and/or have a negative experience lol. When I read about the extremely positive experiences from others in the clinic where I'm currently a patient there, I feel like I'm crazy and imagined all the barriers and miscommunication. I wonder what I did wrong to be given the run-around. Case in point: I was told by a coordinator in this clinic that I have an order for a follow-up appointment with the physician coordinating my care, and I literally just called scheduling to schedule the appointment, and they can't schedule it.

She said she needs to "request access" to schedule it and will call me back once she has it, which I suppose is fine. But I've been told that before, multiple times, only for no one to call me to alert me to schedule. And by the time I do, all the appointments are booked.

But now I'm just venting >_<

I do wonder about what you're saying. There's a professional athlete I saw on the news who had a highly treatable form of cancer (I know, any cancer is not without risk, and I'm not trying to minimize his situation, and there's probably more to it than what they'd show on the local news), but he was seen at Mayo Clinic Rochester, yet we're in Chicago where there are multiple top-tier academic medical centers that could also treat this type of cancer.

That said, I do wish you luck with finding answers and treatment.