MS Misdiagnosis Too Common, Puts Patients in Unnecessary Peril from Therapies, Study Reveals

MS Misdiagnosis Too Common, Puts Patients in Unnecessary Peril from Therapies, Study Reveals

Nearly 18% of new multiple sclerosis (MS) patients referred to two speciality clinics in Los Angeles, California, had been misdiagnosed with the disease, according to a recent study.

Most of them actually were affected by migraines, among other conditions, and had been taking MS medications unnecessarily for years, many of which have an associated risk of serious side effects to the brain.

The findings are in the study “Incidence of multiple sclerosis misdiagnosis in referrals to two academic centers,” published in the journal Multiple Sclerosis and Related Disorders.

Although misdiagnosis of MS is a reality, with all that implies for patient morbidity and healthcare costs, the actual frequency of such cases is unknown.

Researchers at the Cedars-Sinai Multiple Sclerosis and Neuroimmunology Center, in collaboration with researchers from University of California, Los Angeles (UCLA), and the University of Vermont, were interested in filling this knowledge gap.

To determine how many patients were misdiagnosed with MS, and identify what they might have in common, researchers reviewed 241 new referrals to two MS clinics — the Cedars-Sinai and UCLA — of patients who had been diagnosed with MS by other doctors.

After re-evaluation at the clinic, 17% of the patients at Cedars-Sinai and 19% at UCLA were determined to have been incorrectly diagnosed with MS.

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Most of these patients then were diagnosed with migraine (16%), followed by radiologically isolated syndrome (9%) — a condition in which brain MRI findings resemble those of MS, but whose patients experience none of the symptoms characteristic of MS. There also were patients who had spondylopathy (a disorder of the vertebrae, 7%), and neuropathy (nerve damage, 7%).

“The diagnosis of MS is tricky. Both the symptoms and MRI testing results can look like other conditions, such as stroke, migraines and vitamin B12 deficiency,” Marwa Kaisey, MD, MS specialist at Cedars-Sinai, and lead author of the study, said in a press release.

“You have to rule out any other diagnoses, and it’s not a perfect science,” Kaisey added. 

The majority of those misdiagnosed — 72 percent — had been prescribed MS treatments, and nearly half of those (48%) had been taking therapies with a known risk of serious side effects, namely progressive multifocal leukoencephalopathy, a viral infection that causes gradual damage to the white matter of the brain.

“I’ve seen patients suffering side effects from the medication they were taking for a disease they didn’t have,” Kaisey said. “Meanwhile, they weren’t getting treatment for what they did have. The cost to the patient is huge — medically, psychologically, financially.”

The misdiagnosed patients analyzed spent, on average, four years receiving treatment for MS. The researchers estimate that about 110 patient years of unnecessary MS disease-modifying therapy were used in just this group of patients. Those treatments were calculated to have cost almost $10 million.

“MS misdiagnosis is common; in our combined cohort, almost 1 in 5 patients who carried an established diagnosis of MS did not fulfill contemporary McDonald Criteria [current guidelines for diagnosing MS], and had a more likely alternate diagnosis,” the researchers wrote.

The team is now investigating new MS biomarkers and trying to improve imaging techniques, to help doctors reach a more accurate diagnosis and reduce the number of MS misdiagnoses. 

Ana Pena, PhD Author
Ana is a molecular biologist with a passion for discovery and communication. As a science writer she looks for connecting the public, in particular patient and healthcare communities, with clear and quality information about the latest medical advances. Ana holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in genetics, molecular biology, and infectious diseases
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Ana Pena, PhD Author
Ana is a molecular biologist with a passion for discovery and communication. As a science writer she looks for connecting the public, in particular patient and healthcare communities, with clear and quality information about the latest medical advances. Ana holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in genetics, molecular biology, and infectious diseases
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8 comments

  1. Eric mac says:

    Wow that’s horrible I would think with today’s MRI I think it would be more accurate. I have ms and thank God it was diagnosed correctly.I understand it but not really.

  2. Kmail says:

    Excessive numbers, this drug is indicated for aggressive MS, highly active disease, misdiagnosis is an art, there are clear symptoms, findings on MR and in CSF. I think, there are misinformation,not misdiagnosis.

  3. Loraine says:

    If you look it up you will find that mri image does not pick up everything. The only reason they use mri scans to diagnose MS is your scan looks the same as someone else who was diagnosed with MS. Mri can read 2 legions at one scan, then the next scan it can say 200 legions, another the next it can say none. Thats why patients think their legions are dissappering or gone when in reality the scan just couldn’t read it. So a person can have MS and legions may never show on a scan. While other people’s scans look like a Christmas tree. Doctors want to see legions on the scans before they diagnose. Some people have MS but there are no legions on the scans so they are told they have something else.
    MS symptoms and treatments should let a person know if they have MS not the scans.
    Some people scans can look like another person’s scan who has MS and that is why that person is diagnosed with MS. They might not have MS.
    This is why MS is so hard to diagnose. Many people end up with a wrong treatment plan cause their doctors go by the scans.
    My doctor did physical test on me and witnessed my symptoms before treatment and after. I was much better after. Still today if I miss a treatment I go downhill quick. If you don’t have MS the MS modifying drugs shouldn’t have any effect on your symptoms. Meaning you see little or no change.
    I had my doctors college refuse to treat me cause my scans showed no legions. They told me I had a psychological problem. What she didn’t know was I had already been seen by a psychologist who said they saw no issue of it being psychological. Then I saw another psychologist after the refusal of my treatment. That psychologist didn’t see any psychological issues either. Needless to say I went 2 months without treatment. I ended up not being able to walk talk or even think clear. I lost a lot of time at work and a month after I started treatment again I couldn’t work anymore. I’m a single mother of 3 kids in school. I lost 50% of my mobility due to being refused treatment cause my scans don’t look like someone else’s. I’ve got some mobility back but I’m not the same. It all could have been avoided if doctors relied on more than just mri scans.

  4. JK says:

    All MRI tests need to include the LUMBAR section of the spine. MS will not show up in the lumbar, but a bulging disc on your nerve will. This bulging or herniated disc can affect
    bowel / bladder, walking, balance, leg weakness, and more. Also this condition will PROGRESSIVELY get worse if not correctly diagnosed. I had four MRI from 2012-2015 and none of them included the LUMBAR. I just had my lumbar mri and found a bulging disc.

  5. K says:

    I was misdiagnosed in 2005. Had a Stroke on 2017. That’s when I was told I did not have MS. So yea I’m pissed. Was it the meds? No one knows why I had a stroke.

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