by Jody Berger
Time is also an issue. Dietary solutions are rarely immediately visible and take time to diagnose—time that physicians don’t always have with their patients. Nationally, primary care doctors see an average of twenty-five patients a day. If they worked ten hours and spent all their time with those patients—no lunch, no paperwork, no bathroom break—they’d have twenty-four minutes with each patient. That’s all, just twenty-four minutes to listen, explain, evaluate, answer questions and make recommendations. And while they’re already crunched for time, there’s also a slew of outside pressures pushing them toward the seemingly quicker solution of prescribing pills: persuasive salespeople, forceful marketing campaigns and favorable data on drugs, all of which pharmaceutical companies frequently sponsor or manipulate. That can be a lot to stand up against.
Furthermore, doctors are told they are special—superior even—just by virtue of getting into medical school. This can lend itself to a serious sense of superiority and overconfidence in their own opinions, ideas and solutions. Then, they spend years and years learning the latest, greatest gadgets and keeping up with the newest chemical compounds. They are trained to diagnose, and when they complete their schooling, they are licensed and paid to do the same. Well-respected, well-known neurologists are pretty much loaded for bear. With all their accumulated knowledge and technology, swatting a fly can’t be that fun. And gluten, smaller than a fly, is something the patient can handle on her own—no doctor needed. No billing code to jot down.
Still dangerously and endlessly curious, I pulled out the one-pagers Silver gave me. I called each pharmaceutical company and asked for more information. I said I had been diagnosed with MS, which was true, and that I was considering taking their drug, which was not. I said I’d like to know more about each drug and wondered if they could send me the original study that was referenced on the pages I held. Each company’s representative said there was no more information, not for me. One said, “If you have your doctor call with the request, we might be able to send him the study.”
“Him?” I asked, incredulously, as if the sexist assumption were the only crime.
These companies were selling something to alter brain chemistry, and they acted as if a potential buyer would just say, “Oh, OK,” and swallow the pill—or inject the prescription, in this case—without asking any questions. That’s not how my brain works. I assumed if they didn’t want to show their hand, they had something to hide.
And that excited me. I was a journalist once. I had investigative skills. I wanted to flex them. And honestly, it didn’t seem that hard. Drug studies done for FDA approval are public information.
From the comfort of my own desk, I went to the National Institutes of Health PubMed database and searched “Betaseron,” one of the drugs recommended. Among the first citations was this from the British Medical Journal: “Why Interferon Beta 1b Was Licensed Is a Mystery.” The author wrote that the drug “has been shown to reduce the rate of relapse in relapsing multiple sclerosis by one third and to diminish the accretion of disease as shown by magnetic resonance imaging. Unfortunately, neither of these two variables has any convincing relation to disability.”
The scans, in the author’s experience, showed no relationship to disability. He mentioned patients “who seem on magnetic resonance imaging to have no brains left, who lead full and active lives”—asymptomatic lesions in other words—and patients with severe disability “whose scans apparently show trivial disease.”
I spent four or five hours searching the database and found nothing that seemed a compelling argument for the drugs.
I felt vindicated, a little restless and eager to spread the news. How many people are like me? How many people are quickly diagnosed based on an MRI that doesn’t correlate to the physical reality? Silver said MS was the most common diagnosis he gave to women. How many doctors are like him? And how many diagnoses are really misdiagnoses?
I called the Rocky Mountain MS Society and said I was a journalist writing about my diagnosis. I asked if there was someone I could speak to, and the receptionist suggested Pat Daly, the director of counseling and support services.
We scheduled a meeting, and I prepped like I was prepping for an interview with an NFL coach. I scoured newspaper stories, magazine articles and books; I made phone calls; I searched the MS Society’s website; and I reread notes taken throughout my adventures in Healthcareland. I wrote questions, read them and wrote more. I scavenged libraries and bookstores, and found Ann Boroch’s Healing Multiple Sclerosis and Elaine DeLack’s They Say It Didn’t Make Cents: MS and the Prokarin Story.
Both women experienced serious symptoms that were diagnosed as MS and both cured themselves in different ways. And while I was thrilled with these two, I found an even more appealing woman on YouTube: Dr. Terry Wahls, who gave a TED Talk called “Minding My Mitochondria.”
An internal medicine physician, Wahls was diagnosed with MS in 2000. She had access to the best doctors and the latest and greatest medicine available. She tried chemotherapy and other immune-suppressant drugs and still slid from walking to a wheel chair in four years. Frustrated, Wahls conducted her own research and radically changed her diet—avoiding most grains—to alter her mitochondria, which she called “the power plants that keep our cells going.”
“Aren’t they beautiful?” she said as she marched, energetically and unassisted, around the stage, waving her arms and pointing to a picture of translucent blobby oval. As Wahls talked she also showed photos of herself—first in a judo pose, then in a zero-gravity wheelchair, where she couldn’t lift her head, and finally, after overhauling her diet, riding a bike and sitting, smiling, on a horse.
I made a mental note to call Christopher, my skinny guide back in Vancouver. He had suggested I find people who did what I wanted to do and follow them. These women were it, having blazed a trail. They knew that nothing was forever—not sickness, not sadness, not even belief systems. Wahls was a great example. She believed in diagnoses and doctors. And she lay down, took all that Western medicine could offer, tossed her assumptions aside, devised her own plan and got back up. She was proof that the human body could move in many directions—toward ease, away from disease, sideways, upward and onward.
A body can fall out of balance and find it again.
CHAPTER 20
Experts Say
The sky was wide, open and blue as I drove to the Rocky Mountain MS Society for my interview. And my optimism was nearly as big.
This interview, I believed, was going to cap this year of searching. The MS Society would know about MRIs, misdiagnoses, Terry Wahls—a doctor who had healed and explained how in a TED Talk—and how diet affects health and well-being. They would know that gluten sensitivities can mimic symptoms of MS and that one MRI without clinical findings was more of a Rorschach test than anything definitive or damning.
The MS Society, and its Colorado branch, I assumed, would be staffed by experts in all things related to MS. In my mind at least, they would be on the cutting edge of understanding, or at least compiling the various stories of people like me.
I pulled into the parking lot of an old school, and before I got out of the car, I watched a woman trying to load men and women in wheelchairs into a short bus as if they were cattle. I felt for them and felt the pull again of that small sliver of fear that maybe I had it too. That maybe the MRI was right and everything I learned was wrong. I wondered if, after all of the crazy things I’d done over this year, this was my dumbest idea ever.
I went in anyway. Time to settle this matter once and for all.
Inside the building in Westminster, a peaceful suburb where people walk their dogs on wide paths and city council members post their home phone numbers online, the receptionist sat behind bulletproof glass. She buzzed the door so I could walk around and talk to her face-to-face, over a counter without the glass. She was sitting at a long desk at the end of a long room. Behind her, i
n the big, open space that may have been the school lunchroom at one time, twenty or thirty people whirled around in motorized wheel chairs. I told the receptionist I had an appointment to interview the society’s spokesperson, Pat Daly. The receptionist pointed me to a bank of offices off the hall.
I walked the length of the building and took a seat to wait. After a few minutes, Pat asked me into her office. It was small with a big desk and two chairs facing each other.
For a moment, I wondered what I was I thinking when I made this appointment. Then I looked down at the notebook in my lap. Oh, right—I’m a reporter. Other people in situations like mine may not have the skills or stubbornness that it took for me to find the right diagnosis, the right treatment, and the right doctor or expert who could help. Throughout my journey, I’d come to realize how many people get locked into misdiagnoses and then have to suffer the consequences. After everything that I had been through, I had taken charge of my own health, and I was determined to help others who have been misdiagnosed, undiagnosed, underdiagnosed or even overdiagnosed become their own self-advocates for their health. I would ask questions for them. And I’d start with an easy one: “How did you get started working here?”
Pat told me she’d been working for the society for years and had left for a while but came back.
“Is it challenging working with MS patients when it’s such a scary disease and so difficult to diagnose?”
“No, it’s not,” she said and looked at me like I was not very bright. “It’s not difficult to diagnose.”
Wondering what I was missing, I said, “What do you mean?”
“I’ve been here for years and I’ve never, not once, heard of anyone being de-diagnosed.”
“You never heard of anyone who was diagnosed with MS and then found out it was something else?” I asked.
“No, never,” she said.
Interesting, I thought.
But, Daly added, life had become much better for those diagnosed since the disease-modifying drugs came into existence. She asked if I was on them and when I said no, she suggested I start on them quickly. Research, she said, shows that people have better results if they start taking the drugs straight away.
“I hadn’t heard that,” I said. “Do you have that research?”
“No but it’s a public document. I’m sure you can find it.”
That’s helpful.
As I began to discuss the Mayo Clinic’s website, which said that many patients do really well without taking drugs, she barely let me finish. “That must be old information,” she said.
“So the patients did well, but in retrospect you think they didn’t?” I asked.
“Look,” she said, “you don’t understand MS. I’ve got a cartoon on my computer that will help.”
She spun the computer screen so we both could see it and opened a file with a red and green drawing of the brain. There was a yellow spot on the surface that represented a lesion.
“See, as MS progresses, the lesion eats up brain cells—click, click, click, click, click—like Pac-Man,” she said, cheerfully imitating the noise of the video game.
“Click, click, click,” she continued, using her hand like a snapping bird to demonstrate how the MS (Pac-Man) would eat brain tissue. She clicked to the next picture, which showed the same red and green brain with a much bigger yellow spot. And on the third picture, the lesion had grown even bigger and the brain had grown smaller inside the cartoon skull.
“Over time, the brain gets smaller and smaller and smaller,” she said, a bit too cheerfully.
I inhaled deeply and looked down at the note pad in my lap.
“Yes, the brain shrinks, eventually to the size of a raisin. And that leads to greater disability.”
I don’t know how I got through the rest of the interview. What a dark world she described, where everything moves inescapably toward chaos and pain. And at this point, I already knew that wasn’t my world. I also knew what she was saying wasn’t true for me.
After all, I had been searching for a year for my own answers. I heard different theories and different belief systems and had finally arrived at the truth: there isn’t one right answer that is true and right for everyone.
One ugly MRI did not mean take the drugs and accept the disease. It didn’t mean that for me—or for Ann Boroch or Elaine DeLack or Terry Wahls, the women who’d been diagnosed and had devised their own cures. If an MRI and MS diagnosis weren’t the end of the story for us, then they didn’t have to mean the same thing for everyone.
And yet the woman who spoke to MS patients for the Rocky Mountain MS Society seemed to argue that an MRI was infallible; that lesions undeniably mean MS; and that in the case of an ugly MRI, there were only two choices: drugs or declining health.
Feeling like I’d heard enough, I wrapped up the interview quickly. And as I drove away, I wondered how many “experts” were locked into the same narrow logic and how many patients had been harmed by that.
I continued researching the disease and eventually found three MS specialists—board-certified, highly respected neurologists—at the Oregon Health and Science University who were seeing so many misdiagnoses in their practices that they became curious. They wondered, much like I did, how many patients are saddled with a label that doesn’t fit. They sent a survey to their peers across the country and asked if others also saw a lot of misdiagnoses. Nearly everyone, 97 percent, had seen at least one patient in the previous year with a long-standing misdiagnosis. A majority had seen more than five. Two-thirds of the doctors surveyed said informing a patient of their misdiagnosis was challenging, and about one in seven, or 14 percent, said they chose not to tell the patient at all.
The last part was staggering: 14 percent of MS specialists saw a patient who believed he or she had MS, determined that it wasn’t MS and chose not to tell the patient.
Astonished, I called one of the authors asking for an explanation. “MS is a clinical diagnosis,” said Dr. Dennis Bourdette. “It requires a lot of experience and people don’t take the time.”
On the survey, the doctors could select from several reasons for not informing the patient. Some feared the truth could cause psychological harm or a loss of support. But in choosing not to inform the patient, the doctors would never know if the news would cause psychological harm. And even if they worried that the patient would no longer be eligible for disability payments, payments are made on the basis of disability, not the label. If there were reasons other than MS that a patient couldn’t work, the patient still wouldn’t be able to work and would still be eligible for financial support. So that couldn’t be a reason for them not to inform their patients.
Other doctors surveyed felt the referring physician should break the news, or that the news didn’t need to be broken because the diagnosis was benign.
Benign? I was nearly breathless when I read that. Benign? If patients are experiencing symptoms of some sort and are being treated for something they don’t have, then they’re not being treated for something they do have. In my case, for example, I was told I had MS when in fact the issue was a gluten intolerance. If one of the other doctors I saw had determined this later but chosen not to tell me, I would have continued eating gluten indefinitely, causing more damage to my intestines and making me feel worse and worse, with no end in sight. And if I had taken the interferon drugs, which research shows only work in about one-third of the patients, I might have resigned myself to declining health and said, “Well, I tried.”
I called Dr. Andrew Solomon, who coauthored the study. He was as generous with his time as Bourdette was, and just as understanding about how angry this study made me.
“One in seven?” I asked.
“I’m an MS specialist,” Solomon said. “So I see MS and not MS all day long. Other neurologists, where it’s a small part of their practice, don’t have the same experience.
; “I think people overinterpret the MRI,” he said. “And there’s an overreliance on the test.”
He told me that he, Bourdette and the third author—Dr. Eran Klein—were committed to more research. More studies could be published in more journals and presented at more conferences to reach more neurologists. And if more neurologists understood the intricacies of diagnosing MS, that may lessen the risk of overdiagnosis and lead to better patient care overall.
“I’m grateful you’re looking into it,” I told Dr. Solomon. “I really am.”
I was and remain grateful that these three doctors are thought leaders in the world of MS and that they are on the case to uncover misdiagnoses and improve patient outcomes. And I wish their reach were bigger than the MS world. Research shows that as many as one in five of all diagnoses, across all categories, are misdiagnoses. One report found that the number of fatal diagnostic errors in intensive-care units in the United States equals the number of deaths related to breast cancer each year—40,500.
In his bestselling book How Doctors Think, Dr. Jerome Groopman calls misdiagnosis “a window into the medical mind.” He reviewed recent studies that show medical errors are caused more often by flawed thinking than technical mistakes.
“In one study of misdiagnoses that caused serious harm to patients,” Groopman writes, “some 80 percent could be accounted for by a cascade of cognitive errors, like the one in [a specific patient’s] case, putting her into a narrow frame and ignoring information that contradicted a fixed notion.”