MS News that Caught My Eye Last Week: Misdiagnosing MS, Gilenya Relapse Study, Ocrevus in England, Estimate of Americans with MS Doubles

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by Ed Tobias |

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

We know that MS is a difficult disease to diagnose, but is it really possible that 20 percent of the MS diagnoses are wrong? Apparently so. This study reports that these misdiagnosed people spent an average of four years under specialized MS care at two centers in California before being correctly diagnosed.

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.

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Continuous Use of Gilenya for Up to 3 Years Can Lead to 50% Drop in Annual Relapse Rates, Real-world Study Says

This nonclinical study didn’t compare Gilenya (fingolimod) to a different disease-modifying therapy. Instead, it followed patients treated with Gilenya and compared the number of their relapses before treatment with the number after treatment began. The news seems very positive. Note, however, that three of the seven researchers collecting the data for this study work for Novartis, the pharmaceutical company that manufacturers Gilenya.

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Multiple sclerosis (MS) patients who began treatment with Gilenya (fingolimod) and stayed with it continuously showed a more than 50 percent reduction in annual relapse rates, a real-world study following these people for up to three years found.

Results were reported in the study “Real-world durability of relapse rate reduction in patients with multiple sclerosis receiving fingolimod for up to 3 years: a retrospective US claims database analysis,” published in the Journal of the Neurological Sciences.

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Petition Urges NHS England to Make Ocrevus Available for PPMS Patients

Can someone explain to me — or better still, to the people treated in England’s National Health Service (NHS) — why the one disease-modifying therapy that’s approved to treat primary progressive MS (PPMS) in the U.S. isn’t in England? It’s approved for NHS patients who have relapsing-remitting MS, so why not for PPMS? A petition drive seems like an overly mild form of protest. People with MS need access to treatments that have been shown to help them. Arggggh!

More than 21,000 people have signed a petition calling for Ocrevus (ocrelizumab) to be made available by the National Health Service (NHS) in England for people with primary progressive multiple sclerosis (PPMS).

According to an MS Trust press release, the letter was signed by the MS Society UK, MS Trust UK, Shift MS, and leading neurologists, and was given to the National Institute for Health and Care Excellence (NICE), NHS England, and Roche (Ocrevus’ manufacturer) urging them to act to make the treatment available.

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Newly Published NMSS Study Confirms Nearly 1 Million Americans Have MS

Wow. The nearly 1 million number is more than double the figure that scientists had used for years when talking about Americans with MS. This report also confirms the belief that people living in the nine U.S. states comprising the Northeast (Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Vermont) had a higher rate of MS than those in the South and West.

It’s finally official: Around 900,000 Americans and quite possibly more than that have multiple sclerosis (MS) — easily double the long-accepted figure of 400,000.

Since MS News Today first reported on this finding in November 2017, the National Multiple Sclerosis Society (NMSS) study, which reached that conclusion, has undergone a peer review process and has been accepted for publication in Neurology, the journal of the American Academy of Neurology (AAN).

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Harold Sammons avatar

Harold Sammons

Been living with MS for 35 years!


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