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MS Community› MS Articles› Hmmm . . . misdiagnosed?
|Hmmm . . . misdiagnosed?|
|Written by LITLEFAWN3|
|22 January 2009|
Hmmm . . . misdiagnosed?
Why Spokane's infamously high MS rates may be nothing more than a self-fulfilling myth
"The tests, the doctor said, had come back negative. It was a shock to hear, the kind of shock that follows life-altering news. Especially news that comes out of nowhere. Before she got angry, Heather Audel-Neal was just very, very shocked.
Four long years in which she had lost a career she loved. Four years of extreme fatigue, as she planned her three or four good hours a day around her kids’ school schedules. Four years, it turned out, of not having MS.
“You had a stroke,” Olek told her.
“Would you have ever called this MS?” she asked him.
Sitting beside her husband, who was quaking with anger and battling tears, Audel-Neal stared at Olek, struggling to make sense of the words coming from him.
“Well, was my case just really tricky?”
As the region’s only trained MS specialist, Olek has delivered similar news to more than 100 people in the year he’s been at Rockwood Clinic. And he’s come to a rather startling conclusion: Spokane doesn’t have an abnormally high number of MS patients.
Decades of being told that Spokane has the second highest prevalence of MS in the world, and the region’s new MS specialist says that it’s nothing but myth. That a lack of training and expertise led to a number of misdiagnoses. That the myth perpetuated itself, with patients and physicians swayed by the reputation. That we’re as normal as we can get when it comes to MS.
“I don’t think we have an epidemic here,” Olek says. “The numbers show a high incidence [of MS]. But maybe the numbers aren’t correct.”
Audel-Neal, sitting in Olek’s office last March, freed of MS, asked him one more question.
“What do I do now?”
Olek’s office is tidy but cramped and doesn’t give the impression that he came to town with big plans. But he did. For one, Olek hopes to turn Rockwood Clinic into a fully functioning MS center, a one-stop shop for patients. There’ll be physical therapy, clinical trials, routine check-ups, orthotics. It’s a monumental change from how Rockwood, with its various locations spread around town, currently does things.
In the meantime, while he proves that such a scheme is profitable, he works from his small office. Two walls are dotted with seven diplomas from institutions like Harvard Medical School and the Philadelphia College of Osteopathic Medicine. There’s a rubber brain on a bookshelf, in front of rows of books on MS. There’s a picture of his dog, Charcot, named after the French neurologist who first identified the disease in 1868.
Olek himself had no personal ties to the disease when he embarked on his career — he didn’t know one person who had it. But he was a medical student with a thirst for research. In 1993, after a few of years of neurology internships and residencies, the excitement surrounding MS — thanks to a new oral treatment, which ultimately failed — compelled him to focus on the disease. He became the clinical neuroimmunology fellow at the Brigham and Women’s Hospital at Harvard and never looked back.
He stayed at Harvard until 2002, treating TV host Montel Williams, among others, before moving to the University of California at Irvine and the University of Texas Southwestern at Dallas. In November of 2007, he landed at Rockwood Clinic.
As the clinic’s only MS doctor, he set about to review the case of every one of its 800 patients.
He focused on four things — the only indicators he needs to re-diagnose or un-diagnose his patients: The patient’s history, an MRI, a spinal tap and a visual evoked potential exam. He says the accuracy rate for diagnosing MS is pretty high with these criteria. “Ninety-nine percent of the time, if all of those line up together.”
So far, 500 patients have lined up for an examination by the new doctor. Olek estimates that he’s re-diagnosed 20 to 30 percent of them. That is, about 100 people who thought they had MS before Olek came to town don’t think that anymore.
Those misdiagnosed with MS are still sick, he points out. They have something. It could be as ordinary as migraine headaches, trauma, high blood pressure or diabetes. Or as serious as a history of substance abuse, lupus or, like Audel-Neal, a stroke. They just don’t have MS.
“When people have a chronic condition and they’re told by one doctor one thing, another doctor another thing, it’s difficult,” Olek says. “Is [my re-diagnosing them with something other than MS] going to impact the patient’s health? I don’t think so.
Fortunately, the medicines that are available for MS, even though they are injectable, are relatively benign. They don’t have any long-term effects. I’ve taken patients off medicines. I don’t think that’s had a big impact on their health. Psychologically, it may.”
As for why there’s such a large number of misdiagnoses, Olek believes it’s a combination of three factors. First, he says many patients weren’t given a complete work-up when they were originally diagnosed. Second, the lack of MRI technology severely limited what tools doctors had when diagnosing some of the area’s MS patients. Lastly, and perhaps most frighteningly, Olek says the idea that the area had a high prevalence of the disease perpetuated itself. . . ."
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