It was my 2015 annual check-in, and my neurologist and I were in the exam room. I was sitting on one of those little stools with wheels, he was leaning across the exam table. We had just finished discussing my steadily worsening symptoms and treatment plan, which consisted of continuing the RRMS meds I was given while we waited for science and medicine to catch up.
“I need to let you know that I’m getting a second opinion about my treatment from a neurologist at the Cleveland Clinic,” I told him. We recently had returned from our first visit to the Cleveland Clinic and the Mellen Center for Multiple Sclerosis, which bills itself as “One of the largest and most comprehensive programs for multiple sclerosis (MS) care and research worldwide.”
“But in a bigger way,” I continued, “I want to be more engaged and involved in determining and leading my treatment. I don’t want to hurt your feelings and I respect your ability, but I have to do everything I can to get the best possible treatment I can. There’s simply too much riding on it now.”
Stomach in knots, I waited for his reaction.
“That’s okay,” he said. “I understand and don’t blame you. I think I’d probably be doing the same thing. But I am glad you told me.”
Not long ago I read an article on Quartz titled “Get a second opinion—doctors usually aren’t right the first time,” promoting the value of getting a second opinion from doctors. The gist of article stated that Mayo Clinic research found that 88% of the time that a “patient’s original diagnosis changed at least slightly when a second medical professional was consulted.”
What the article didn’t include were ways to actually have that conversation. There were no “five simple steps for telling your doctor you want a second opinion.” (We love our “five easy ways to be sexier or thinner,” or “have six-pack abs,” or even “dress right to be absolutely perfect in every way.”)
I saw multiple neurologists over 13 years before being diagnosed, and that came only after self-referring myself to a different practice than the one I’d been using. I am 57 years old and, like others my age, grew up believing physicians were infallible, placing them on an impossibly high pedestal. Combined with the dizzying prospect of having MS, the realization that doctors are humans, too, and that the healthcare system is prone to mistakes, threw me for a loop.
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