Almost 1 in 5 People Wrongly Diagnosed with MS at Two Specialized Centers in US, Study Finds

Almost 1 in 5 People Wrongly Diagnosed with MS at Two Specialized Centers in US, Study Finds

Almost one in five patients diagnosed with multiple sclerosis (MS) and referred to one of two MS-specialized centers in the U.S. were found to not have the disease, a study at those two centers reported. Migraine was the most common correct diagnosis eventually given these people.

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

No single test can directly identify MS, and a diagnosis can be difficult. To rule out MS-mimicking conditions during clinical assessments, physicians perform a set of evaluations that include lab tests, a patient’s medical history, and magnetic resonance imaging (MRI) scans of the brain.

To better establish clinical recommendations, speed-up diagnosis, and avoid misdiagnosis, an international panel established the McDonald criteria for MS in 2001 in association with the National Multiple Sclerosis Society. The panel further revised the criteria in 2005, 2010, and 2017.

But misdiagnosis can still be prevalent, raising a risk of improper treatment for the person and needlessly higher healthcare costs to the society.

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A clinical team at the Cedars-Sinai Medical Center in Los Angeles performed a retrospective (backward-looking) study, investigating the rates and types of MS misdiagnoses at two  local MS-specialized centers.

Out of 364 patients evaluated for MS at Cedars-Sinai and at the University of California, Los Angeles (UCLA), 241 were referred for treatment between July 1, 2016, and June 30, 2017.

Results showed that 19 (17%) of these patients at Cedars-Sinai and 24 (19%) at UCLA had been misdiagnosed. These people spent an average of four years under specialized MS care before being correctly diagnosed, with one wrongly treated for MS for 20 years.

Most of these patients showed clinical symptoms uncharacteristic for MS, including headache — 74% in Cedars-Sinai group, and 67% in UCLA group.

Most were given an MS diagnosis after an MRI or a cerebrospinal fluid assessment.

The most common correct diagnoses finally given were migraine (16%), radiologically isolated syndrome (9%), spondylopathy (7%; a disorder affecting the vertebrae), and neuropathy (7%; a disorder affecting peripheral nerves).

Researchers then analyzed the types of treatment used by misdiagnosed patients. They found that 72 percent had been prescribed disease-modifying MS treatments, with 48 percent of patients receiving therapies with a known risk of progressive multifocal leukoencephalopathy, a serious viral brain infection.

About $10 million was the estimated cost to U.S. healthcare system due to the unnecessary use of MS disease-modifying treatments.

“In our combined cohort, almost 1 in 5 patients who carried an established diagnosis of MS did not fulfill contemporary McDonald Criteria and had a more likely alternate diagnosis,” the researchers wrote.

“Misdiagnosis appeared to be associated with misapplication of MS diagnostic criteria, specifically overreliance on – or misinterpretation of – radiographic findings in patients with syndromes atypical for MS,” they added.

Given these findings, the team emphasized the need for MS-specific biomarkers to help more accurately diagnose MS.

9 comments

  1. LuAnn Sullivan says:

    This is outrageous! How could a neurologist who specializes in MS mis-prescribe DMT? I hope these physicians have had their licenses revoked and the patients received payment for damages and suffering at the very least!!

  2. Jeff says:

    If out of the THOUSANDS of patients diagnosed with MS by Neurologist only 20% are misdiagnosed? Really? Is that all? That’s why we have MS Specialist! Send THAT study to all General Neurologist! Let THEM refer their patients to an MS specialist!

    It’s a difficult diagnosis. That’s why all insurance companies will pay for a second opinion. Get a second opinion! Doctors make mistakes too!

  3. TERRY BULLARD says:

    My cousin inherited “drop foot” from her father. She was diagnosed with multiple sclerosis and given disease modifying drugs for more than ten years. She never exercised and eventually died when a blood clot went to her brain. She was less than 60 years old.

    • Elaine L says:

      I am so sorry. I have met my share of neurologists who are less than professional even as they work for highly reputable hospitals.

  4. Joni Mercado says:

    In 1980, I had optic neuritis & was prescribed oral prednisone. My husband read on Medline that it should be given along with intravenous
    prednisolone or the optic
    neuritis would return. It did, 2 years later.

    In 1991 was diagnosed with borderline Lyme Disease & borderline MS.
    I was prescribed intravenous Rocephin for Lyme. It worked wonders & my double vision disappeared!

    When treated with Avonex & Copaxon for over a year, I felt worse & stopped because they claim they may help reduce relapses by only 30%! I thought how do we know it isn’t MS going into remission on its own? No doctor had an answer.

    My theory is dormant Lyme disease untreated could possibly alter the immune system & become Chronic Lyme (given the name MS) like dormant Chickenpox becoming Shingles decades later!

    I think the name change helps pharmaceuticals earn millions of $$ in profit for themselves & their investors! High drug prices pay for their rampant drug commercials that now dominate the airwaves & for their fancy packaging, out-island junkets, fancy hotels & food, & plane trips….oh yes, & research to develop even more new drugs to experiment on us with, not to mention even the horrible side effects! Each of us has a different body chemistry! We are all unique!

    We need Universal Healthcare in this country! Lobbyists will do their utmost to prevent this from happening!

    • ita sara says:

      Not sure our country can afford Universal Healthcare. It is a good philosophy but may cost trillions in tax money. Also once diagnosed it becomes a pre-existing conditions and how will universal healthcare handle that.. it is already a very controversial topic. Healthcare is an extremely difficult topic to tackle. And it is getting worse.

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