How do I get help?

To clarify the scheduling issue, I was referred to Mayo by my primary. They set up a neurology appointment only not a full evaluation. I live 8 hours away in another state. I was told that I would come in for tests and be sent home the same day. Then they would call me with the results. If they came back normal I would then be scheduled with cardiology and go through another full day of tests. Then they would call with results. If that was normal then I would go through the process with the next specialist ie, rheumatology or hematology etc. It would be 3 months or more between the appointments and I would have to do a phone call the day before for intake and be at the appointment at 7am the next morning. I would have to pay for a hotel room as they do not book patients inpatient.
Why would my doctors tell me that I would be inpatient over several days with complete testing and someone from scheduling tell me otherwise?

@jdombek1019
I am sorry that your local providers misinformed you of Mayo's process. Mayo patients are seen as outpatients unless they are critically ill or surgery that require hospitalization.

What your describing as comprehensive exam and referrals is Internal Medicine department. Unfortunately due to demand, I am not sure Internal Medicine is accepting new patients. Instead, the schedulers determine the speciality that you should be seen at first. This is your primary contact at Mayo. You may or not may be referred to other depts depending on results of first appointment. Additional test may be scheduled the same week or at later date. That is determined by urgency and availability.

Do you know about Mayo Clinic's free Concierge Services?
They can help make accommodation recommendations suited to your requirements.
Concierge services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
By phone 7 a.m. to 6 p.m., Monday-Friday: 507-538-8438
Email: concierge@mayo.edu

What Mayo campus is your appointment at?

It sounds like you’re going through a lot. I’m sorry to hear this, but you’re not alone.

I’m a little confused—so did you already have an appointment with a Mayo Clinic provider, or did your PCP just say you should try to be seen at Mayo? I think from your second message it sounds like you had an appointment with a neurologist at Mayo, but I just want to make sure I understand.

For your question: “ Why would my doctors tell me that I would be inpatient over several days with complete testing and someone from scheduling tell me otherwise?”

I’m not really sure why they would say that, to be honest. The way the appointments are scheduled and coordinated at least in my experience is highly variable depending on the specific department and urgency of the situation. And…I’ve also found that the physicians aren’t doing the scheduling, so sometimes it’s not always clear to them how things happen. Sometimes what they say is not consistent with how things actually happen, though they don’t mean to be misleading, I presume. This has literally happened to me multiple times.

(And I don’t work for Mayo, nor am I a volunteer… I’m just a person who had a bumpy ride at Mayo, which was not the experience advertised in the commercials, and the people here are kind, and everyone is well-intentioned, so I try to help.)

My recent visits with Mayo sound similar to what you experienced. I had an in-person appointment (initial appojntment is sometimes referred to as an “evaluation”) and that appointment yielded orders for other consultations, tests, and a treatment plan (I’m pointing this out because a lot of people seem to do the “conventional Mayo model” that outside proceeds think of where all the appointments get magically coordinated for you in a week to ten day span, but I did not experience that). I then had to work with their scheduling team to get everything scheduled myself basically, and while we could try to coordinate everything in a matter of days, it wasn’t always possible to schedule everything in the same day. And consultations with different departments couldn’t always be scheduled at the same time because different clinics opened appointments at different times.

I could do some things virtually, others were better to be done in person, and others were required to be done in person. I did it that way because like you, I couldn’t just keep taking days off work to fly across the country. Even when I did, I couldn’t get things aligned.

So my experience sounds similar to what you’ve described. I was upset about it too because when I initially prepared to go, that is not how it was presented and communication with scheduling, depending on the department can be challenging.

Do you have the Mayo Clinic portal set up? If so, I’d suggest to do that. You may be able to see if you have other appointments scheduled. Orders are usually hidden, but you might be able to see a treatment plan and you’ll definitely be able to see notes from that one visit you had, to give you more clues.

What I did (because I was massively confused) is I called the department for my lead physician and I asked them to read off to me every order or referral I had so I could make my own list. Then I asked them how do I go about scheduling these things? Do we schedule them or does someone call me? What do I do? Basically the questions you posted here.

If/when I was still confused, I asked who I could talk to for help. In my case, there was a coordinator whose responsibility it was to help people in this situation. That kind of didn’t work well because she’s overwhelmed so it took a long time for her to get back to me, but in other departments I got help more quickly.

One helpful thing about Mayo is you can usually get to a human on the phone; getting to the right human is sometimes the tough part.

Not sure if that helps, but I hope you’re able to get some answers soon.

I am also confused as well and would like to chime in to help where I can. I've had a health journey I'd love others NOT to have, want you to know you are not alone here. I'll stay tuned and look for your response to other posts thus far. Hang in there!

I’m sorry it’s come to this, but love this: “I've had a health journey I'd love others NOT to have, want you to know you are not alone here.”

Very well-put!

So yes, I have had a cardiology and neurology appointment scheduled with the Mayo clinic. My PCP sent the referral in to neurology because she did not know how to do a referral to the Mayo clinic for a general internal consultation/diagnostic appointment. She told me that I would be seen over a course of a few days and by different doctors. She had referred her mom and another patient to the Mayo clinic and said that was how it was done. I set up the neurology appointment and had to move it and eventually cancel it due to my work sending me on a mandatory training. That was in June. The Cardiology appointment was scheduled for August but I had to cancel that due to Covid. And Rheumatology could not do anything until I saw Neurology was done with me. So I had all but given up on the Mayo clinic.
I went to the ER at a local hospital for worsening symptoms and the cardiologist there who did my ultrasound of my heart because my primary thought I had adenomyosis of the heart said that I should follow up with Mayo for everything and stated I would see a panel of doctors and I would be seen over several days. I almost cried at that part and tried to explain it to him but he said I was talking to the wrong people.
I had my annual OBGYN appointment with a new OBGYN yesterday and he stated that all my symptoms were complex and puzzling and that I need to try the Mayo Clinic. I explained my experience so far and he stated that was strange because he was under the impression that they saw the patient inpatient and they tested all at once starting from the beginning like nothing was ever done and diagnoses were quick and thorough.
So I am just overwhelmed. I want to hide under a rock. My patients ask me if I have any answers and if I am still sick because of the weight I have lost, the dark circles under the eyes, and the changes in my personality. I have no answers to give anyone. I am so stressed, tired, and full of doubt I will not get answers until it is too late.

It sounds like Mayo Clinic is there for you, a win! My suggestion is to focus on them and no one else. They are the ones you are seeing and they are so, so good at helping people through the unique process they have. I PROMISE! They seem hesitant, maybe at first. They are conservative to make sure they are doing the best thing for you. When they know how they can help you at any step in the process, they will not be hesitant to respond. They are aggressive to do everything they can to help you. Unfortunately, you have to commit to the process and let them drive the ship. My experience is they are wonderful to help when I do not understand the process. My suggestion is to call the office of your first appointment and ask them what to expect. It sounds like your patients and your PCP that referred you aren’t familiar with what you should expect, so maybe this contact you make can be where you focus.

I see. Thank you for explaining. That’s really rough.

This is based on my experience: Your PCP isn’t wrong. It is common when a referral is sent to Mayo (my PCP) did the same, if you’re offered an appointment, they coordinate several appointments, as they described. But as I was mentioning, that doesn’t seem to happen in every case.

If your Neurology consultation was already accepted, even if you had to schedule, that’s actually a huge step forward. Neurology and Cardiology are difficult to get appointments. I’m not sure if you realized this, but Mayo can actually deny to see a patient even with a referral.

It’s up to you how you want to move forward, but I don’t think I’d get too hung up on the “series of appointments.” People are often scheduled that way, but not all the time (again, I wasn’t). It would be great if they did it for you, but you sound like you urgently want to start getting some answers, understandably. You may need to take the lead, and I’m not saying that to be critical of you… Again, I’m saying it as someone who had to take matters into my own hands at Mayo; otherwise literally none of my appointments would have gotten scheduled.

Can you call and reschedule your Neurology, Cardiology, and Rheumatology appointments? You can try to schedule them for the same time frame since you mentioned you saved your vacation time for it.

Alternatively, you could ask your doctor to try calling the referral line and they may be able to get more clarification. From what my PCP shared, it’s not too difficult to reach someone. He was easily able to call. You can send this website to your provider: https://www.mayoclinic.org/medical-professionals/provider-relations/refer-patient

If your PCP prefers the “series of appointments” situation, maybe they can even change your referral if needed, but that may take more time. Submitting a new referral will probably cause more confusion and might even get denied because most posts I’ve seen here have said they’ve been told at one point or another that they can’t submit too many appointment requests within a certain time frame.

I would set up your Mayo Clinic portal to see what you can see, then call Neurology to ask them what to do. In my experience the department where you’re starting is the one that handles your orders for testing and other consultations and also needs to work with you to schedule those things. They’re supposed to call you to schedule, but some departments are too overwhelmed to do it.

That way, you go direct to the people who are supposed to be helping you schedule to get some answers.

Jacksonville, I live in South Carolina about 8 hours or more away from the location.

@jdombek1019, I hope I can bring some clarity to your situation. First, let me see if I understand correctly.

1. You have been accepted for consultation at Mayo Clinic, Florida in the Neurology department.
2. Unfortunately, you had to cancel the appointment due to unforeseen circumstances.
3. You have not yet been to Mayo Clinic.
4. Your health situation is deteriorating and you wish to reschedule your appointment.

Do I have that correct so far?

Assuming yes, this is how it typically works.

Given that you're primary concern is neurology-related, Mayo experts have assessed that Neurology is the best place to start, based on their review of your medical records as well as your physician's referral.

Once you have your initial appointment, testing and assessment, additional appointments in other departments as required and based on expert evaluation will be arranged. Your neurologist will be your main provider and will quarterback any additional needs with additional experts or "panel" of doctors to use your phrase.

Have you been able to reschedule your neurology appointment?