Around 18 percent of patients sent to two Los Angeles clinics for multiple sclerosis treatment did not do it.
If you have recently been diagnosed with multiple sclerosis (MS), your first step may be followed by getting a second opinion.
That’s the message of a new finding published in May 2019 in the journal Multiple Sclerosis and Related Disorders. In revisiting the cases of 241 people diagnosed with Multiple Sclerosis (MS) who were referred to either the Cedars-Sinai Medical Center or UCLA Health MS clinic, both in Los Angeles, over the course of a year, the authors of the study found that nearly 18 percent had been misdiagnosed.
“Diagnosing MS is tricky,” noted head author Marwa Kaisey, MD, a neurologist at Cedars-Sinai, in a statement released by the hospital. “Both the symptoms and MRI testing results can look like other conditions, such as stroke, migraines, and vitamin B12 deficiency. [As a physician], you have to strike out any other diagnoses, and it’s not a perfect science.”
And most disturbingly, Dr. Kaisey and her colleagues found that many of the MS patients referred to the hospitals (most likely by other physicians in the Southern California area) did not meet accepted diagnostic criteria, as established most recently in 2017.
The High Costs of Being Treated for a Disease You Don’t Have
In most cases included in the analysis, the majority of the patients (72 percent) spent an average of four years being treated for MS before receiving a correct diagnosis. This is significant given the risks associated with many MS drugs.
According to the authors, the most popular correct diagnoses among those who were misdiagnosed was migraine, radiologically isolated syndrome (the presence of MS lesions but not symptoms), spondylopathy (disorders of the vertebrae), and nerve damage (neuropathy).
“I have seen patients suffering side effects from the medication they were taking for a disease they didn’t have,” Kaisey says. “Meanwhile, they were not getting treatment for what they have. The price patients paid is huge — medically, psychologically, financially. The first step, which is what we have done here, is to know the problem, so now we’re working on potential solutions.”
No Single Test to Diagnose MS
“One of the reason there’s a relatively high degree of misdiagnosis in MS is that there’s still no single test, like a blood test, for the condition,” adds Jeffrey Cohen, MD, director of experimental therapeutics at the Mellen MS Center of the Cleveland Clinic in Ohio and one of the authors of the most recent diagnostic criteria for the condition, published in February 2018 in the journal The Lancet Neurology. “Basically, how we diagnose MS is that we build a case for it based on people’s symptoms and MRI findings, and rule out other possibilities.”
Unfortunately, according to Dr. Cohen, this process is further complicated by the fact that many of the hallmark symptoms of MS — like fatigue, for example — are also common to other conditions.
Could Ultra-High-Strength MRIs Reduce the Number of Misdiagnoses?
One possible remedy for MS misdiagnosis may be increased use of ultra-high-field-strength magnetic resonance imaging (MRI) with the 7-Tesla (T) scanner — an extremely powerful device that has more than twice the magnetic field strength of the more common 3T scanners (which in turn is stronger than a 1.5T scanner).
In a study published on April 9, 2019, in the journal Radiology that followed 20 people with relapsing-remitting MS and 13 people with secondary-progressive MS, along with 10 age-matched healthy controls, so-called 7T MRI revealed that 25 people per year, or 80 percent, developed new cortical lesions, which were detected more frequently with the new technology compared with previous studies using 3T systems.
The authors found that the total volume of cortical lesions in people with MS was a predictor of neurological disability at both baseline and follow-up assessment. Among those observed in the study, 7T brain scans showed that the cortical lesions tended to accumulate in grooves on the brain’s surface called sulci.
“Because 7T MRI is more sensitive to cortical lesions than lower-field MRI, we can detect many of these lesions that we couldn’t see before, and determine if they are strongly correlated with neurological disability and disease progression,” explained study senior author Caterina Mainero, MD, PhD, of the Athinoula A. Martinos Center for Biomedical Imaging at Massachusetts General Hospital in Boston, in a press release about the findings.
“This can have a very powerful impact on how we monitor patients with MS. We can also use this tool to see how potential treatments can affect the development and evolution of cortical lesions,” says Dr. Mainero.
3T MRI platforms Capable of Yielding Accurate MS Diagnoses
7T technology is still not widely available, according to Cohen, owing in part to the costs associated with installing it. In addition, aspects of the platform still haven’t received approval from the U.S. Food and Drug Administration (FDA).
Still, Cohen cites research published in October 2016 in the journal Magnetic Resonance in Medicine, which noted that 3T MRI platforms are capable of yielding the detailed images needed for accurate MS diagnosis.
He notes that patients can play an important role in ensuring accurate diagnosis by sharing detailed information on their symptoms and understanding that proper diagnosis and treatment may take time.
“Making diagnosis of MS requires putting all of the available information together,” Cohen says. “And, sometimes, people may have to live with some uncertainty. As doctors, we like to make the diagnosis of MS as early as possible so we can start treatment right away. However, in some cases it may make sense not to rush into treatment when there is still uncertainty.”