@lofturthunk, I have the same concern about my upcoming visit to Mayo Rochester in mid-February. I am scheduled for 4 days of various Fibromyalgia clinics and consultations, but Fibromyalgia seems a bit out in left field for me. Based on your summary of concerns, it doesn’t even seem to be in the ballpark for you.

Like you, I am relatively young (in my early 30s), but, my symptoms are different. My doctors are sending me to Mayo because they suspect autoimmune disease(s), but are having trouble diagnosing. For the first three days of my visit to Mayo, I am scheduled with internal medicine and rheumatology which is what my referring doctor requested. Then last 4 days are the Fibromyalgia appointments.

I did call internal medicine to try to ask about the Fibromyalgia stuff. I got a what seemed like a default response. I was told that after the initial evaluation, they would add and remove appointments as needed. Beyond that, I had a lot of trouble getting information and the representative came across as a bit annoyed.

Maybe they get asked about this a lot? Do you think they just tack on the Fibromyalgia stuff if you fit a specific profile (perhaps younger and with a list of non-specific symptoms) because it is difficult to schedule if they don’t do it in advance?

My biggest concern is that it feels like they are already trying to diagnosis me when they have virtually no information about me. They just have the new patient form I filled out online and the referral from my doctor. The attitude of and lack of information from the representative on the phone has done little to allay my concern.

It is a very big step and investment to make the trip out there and I am already trying to fend off debt from years of medical bills. Mayo is the last resort for me. When you’ve been through enough experiences of wrong diagnoses, lackluster doctors, overworked nurses, and indifferent front office people, you become skeptical and start to get spooked easily. Do we just take a leap of faith and see what happens when we get there? I guess, what choice do we have at this point?

@rosymarya’s link to the First Time and Terrified post was somewhat helpful, but so far, my limited experiences have not been reflective of those stories.

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