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.
According to a 2012 National Public Radio program “Talk of the Nation,” I’m not the only one who feels this way. “Doesn’t asking [for] a second opinion insult the doctor?” a listener asked the program’s expert panel on its 2012 broadcast titled ‘When, And How, To Ask For A Second Medical Opinion.‘ “How could it not? You’re saying that you don’t trust his opinion,” asked the radio host, John Donvan.
Leonard Lichtenfeld, MD, deputy chief medical officer, American Cancer Society, was among the panel on the broadcast. Lichtenfeld noted a dearth of well-trained primary care physicians in the United States. “We are not training primary care physicians in this country,” he said, saying that those physicians were specifically taught to “to bring the pieces of the puzzle together.”
MS has given me a far better understanding of how complex our bodies are, and how challenging it must be to diagnose and treat serious illnesses like mine. More than that, I’ve learned that the healthcare system (at least in the U.S.) was in part created as a system of aggregating and selling healthcare services and providers, not necessarily as a system that provides me with better healthcare.
Professional caregivers, physicians and specialists absolutely deserve respect (and sometimes perhaps reverence). But it is my health and my life. The only ones who will suffer from the mistakes and glitches bound to happen with this complex disease and within the healthcare system will be me, and those I love.
Ultimately, there may be no easy way to ask or tell a physician — or any professional for that matter — that you want a second opinion. There are no simple steps, hacks, or shortcuts. We are all humans, and we all have feelings, and sometimes our feelings get hurt. Like my MS, that’s just life.
I’m glad we had the conversation. I have grown to appreciate my relationship with my current neurologist, and now see it as a partnership created for my benefit. In the beginning there were two opinions that counted — his and mine. Two years ago I decided three heads would be better than two. Besides, we have relatives in Cleveland. We have grown to love the city, and look forward to our annual visit to the clinic. Cleveland is especially pretty by the lake in the fall.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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