Mayo Clinic Arizona is nestled on the northeastern edge of Scottsdale in the desert foothills of the McDowell Mountains. Its main structure looks like a cross between an unmapped military complex and a lost Frank Lloyd Wright building. In a nod to Wright’s organic architecture, the campus blends in with the Sonoran landscape; southern Arizona staples like saguaro, pipe organ cactus, mesquite, and palo verde surround it.
My girlfriend and I drive past the sparse vegetation, then park and enter underground, reinforcing my comparisons to a Cold War military site. We take two different sets of elevators to the second floor.
Hospitals rarely, if ever inspire positivity or happiness. Those waiting next to us either have serious health problems or are accompanying someone who does. Many are in wheelchairs. Several are bald. Others, like myself, have mottled skin.
Mayo Clinic in Rochester, Minnesota is, by most measures, the world’s best hospital. U.S. News and World Report rank its sister campus, Mayo Clinic Phoenix-Scottsdale, eleventh in the United States. I remind myself as I look around, wondering how many of these people are here as a last resort.
Mayo Clinic Uber-Rheumatologist, Part I
Just like any other visit to a specialist, after being called back, a nurse measures my height and weight, and I put on a gown. I wait.
The physician’s assistant enters with a stack of paperwork—written testament to the amount of time I’ve spent over the past six months in doctor’s offices, labs, and imaging centers. Unlike many physician’s assistants, this woman’s thoroughness and knowledge of internal medicine is immediately apparent.
After reviewing my medical history, she spends another half-hour examining my muscles, rashes, and lungs. She finds no additional evidence of muscles weakness or lung involvement.
Mayo Clinic Uber-Rheumatologist, Part II
The doctor enters. In my mind, I’ve talked up his reputation and specialty as though he holds all the answers, but as I told my girlfriend that morning, he is not a miracle worker. But he does know more about dermatomyositis than all but a handful of other highly trained men and women.
The rheumatologist re-checks my muscle strength. He remarks my muscle strength is excellent, but unlike my regular rheumatologist, he notes when a dermatomyositis patient works out as much as me, it’s possible people do not notice the muscle regression.
I certainly did. I went from being able to do thirty push-ups to being able to squeeze out three. Of course, that weakness could be from all the corticosteroids I’ve needed to manage my condition.
He surveys my rashes, then says these are classic dermatomyositis rashes. It’s a relief for someone to immediately recognize what I have.
All that said, he agrees with my rheumatologist that I most likely have amyopathic dermatomyositis. He thinks my prognosis is actually quite good and likes my current treatment plan. He nonetheless orders an electromyography (EMG) test to confirm my muscles are in good health and additional imaging to make certain I do not have cancer (10 percent of dermatomyositis patients have cancer).
My girlfriend asks him if my muscles could get worse over time, if my immune system could further attack itself, if this is only the beginning of the end. She wants answers, to know I’ll be around to love her as long as she is to love me.
He cannot promise that. Neither can I. But for now, apart from the itchy, painful rashes covering my chest and arms, I still have my health.