Is trying to get an appointment worth it?

@winston137

I think it is definitely worth trying to get an appointment at Mayo.

Would your primary be willing to initiate a referral?

For US residents, you can start your appointment request at http://mayocl.in/1mtmR63.
Your request will be reviewed and a time will be set up to discuss with an appointment coordinator to assist you with the process.

What Mayo location were you thinking about going to?

Unless you try, you won't know.
I would suggest contacting your PCP and see if you can get a referral to Mayo. Get some direction from the PCP as to what department you want to start with. Organize your medical records, note where any and all care is provided. It does not mean you have to have copies of everything. Records can be securely sent over the internet.
If you can't get a referral, you can self-refer.

The constant cycling through antibiotics may be problematic long term.

First, I am so sorry for all you've been dealing with - health issues are often multifaceted and exhausting both physically & mentally. Trying to find the right care, the right provider, & the right treatment on top of that can be so overwhelming & such a struggle, even for people well-versed in navigating the healthcare system. But second, due to my personal experience I would say absolutely YES, definitely try to get an appointment at Mayo Clinic and be persistent, even if you feel like giving up at times, because you're worth it! The team approach used at Mayo might be just what you need. Doctors there collaborate across specialties & work as a team to find solutions and to provide the best, most appropriate treatment for patients, which results in the best outcomes possible. My best advice is to have all your "paperwork" in order first, meaning get copies of your medical records/health history/test results from your primary care provider (PCP) and from any other providers you've seen so this information can be shared with Mayo Clinic. Although your PCP may send a digital copy of your records directly to Mayo, it is so helpful to have copies of your own as well, which also allows you to share things if or when needed (doctors' offices are often so busy & overwhelmed with requests, so if you can share or take care of something instead of waiting on them to do it, things will just move along that much quicker for you!). Also, be sure to sign a consent or release of information allowing your PCP and any other providers to communicate with Mayo, to avoid any delays in sending or obtaining information. You can ask your PCP to make a referral for you, just be sure to get the name of the department at Mayo & the number where your PCP sent the referral. I highly recommend keeping a notebook or something where you can keep all this info in one place, so it's easier for you to find & refer back to when needed - literally write everything down, including who you talk to (don't be afraid to ask for names), dates, times, & all pertinent details, as it's much easier to take notes as you go instead of trying to remember everything later. Be sure to ask your PCP if he/she spoke to someone at Mayo & write down any names you are given. Another option is you can call Mayo Clinic yourself, which is what I did. My child needed a neurosurgeon and after two poor experiences at facilities in my home state, I called Mayo Clinic in Rochester directly via their main number and just started at the beginning. First, I told them I was seeking an appt for my child who was diagnosed with (blank), for a third opinion regarding diagnosis & treatment, and the conversation took off from there, led by the representative who answered my call. He asked a lot of questions & took down a lot of information (have your insurance card ready, your health records, & names/numbers of your providers). That representative then put me in touch with the neurosurgery department, who directed me regarding what to do from there on out. I followed their directions and sent medical records & everything they requested myself, then always followed up to make sure they received what I had sent. Then I waited to hear back from them and was called within the time frame they provided. If your provider does the referral for you, don't wait for a call but instead, be proactive & contact Mayo yourself within a few days of the referral to verify they have received it. Record the name of who you speak to & ask for a phone number where you can reach them (always!) and once that person verifies that Mayo has your referral, ask them about next steps: Where or to what department is my referral being sent? Who will be reviewing it? How long should I expect it to take for the review to be completed? When can I expect to hear back from someone about my referral? Who will be contacting me? If I have questions in the meantime, who can I call? And don't be afraid to keep calling, asking, or checking based on the timelines you are given - be your own best advocate & treat yourself like you'd treat a friend or someone you care about, because you deserve the same! Also, consider exploring the Mayo Clinic website and do a search related to your diagnosis & health related concerns - there is so much helpful information available, including lots of short, informative videos containing patient testimonials and insights from Mayo Clinic doctors. I personally found some of them to be very reassuring and helpful, not just because of what the experts had to say but also due to hearing from other patients & their families. I can't say enough positive things about my experience at the Mayo Clinic in Rochester. Their culture is truly patient centered, from all of the healthcare staff to the volunteers, from cafeteria workers to clerks, from security to therapists, every person I've encountered who is affiliated with Mayo has been kind, helpful, and supportive, whether it's at either of the hospitals on campus or in one of the offices, stores, waiting areas, or even the hallways. The healthcare team who has treated & cared for my child are a group of truly exceptional people - they have been wonderful, from our very first visit to every subsequent follow-up appointment, phone call, and message in between. Additionally, the operators, schedulers, and clerical staff who have assisted me along the way have all been so helpful and kind. I truly hope you can be scheduled to see someone at Mayo and find the answers & relief you need. It took some time, patience, and persistence to get an appt for my child, but it was the best decision I've ever made. My only regret was not reaching out to Mayo Clinic sooner. All the best to you.