Is MS ever benign? – ECTRIMS 2017
Highlights from the 7th Joint ECTRIMS-ACTRIMS MEETING, OCTOBER 25-28, Paris, France
It is often said that about 1 in 10 people diagnosed with multiple sclerosis will have a “benign” course of illness, which is usually defined as little or no disability (EDSS score less than 3.0) after living with the disease for over 15 years.
However, characterizing anyone with MS as having benign disease is controversial. This is because the main criterion for a benign diagnosis is walking ability, which neglects all of the many other effects that MS can have on the mind and body. This controversy was a key focus of researchers one the first day of ECTRIMS 2017, the world’s largest scientific meeting on MS.
One study in the UK looked at the population of people with benign MS, which represented about 13% of the total MS population (Tallantyre and colleagues. ECTRIMS 2017; abstract P327). While this group had maintained their ability to walk, only 1 in 4 were functioning normally in other areas of their life. The researchers concluded that some people do appear to avoid many of the problems of living with MS, but that number is small – fewer than 4% have truly benign MS.
In a similar vein, researchers in Italy looked at cognitive problems (difficulties thinking, planning, remembering) in people who had been classified as having benign MS (Razzolini and colleagues. ECTRIMS 2017; abstract P330). Although able to walk, about 1 in 3 people had cognitive problems that were significant enough to interfere with their daily lives. So about one-third of people with benign MS weren’t really benign – if the doctor looked more closely for problems.
While these findings are disappointing, a third study in the U.S. provided a glimmer of hope. MS doctors in Rhode Island found that about 31% of people living with MS for at least 20 years had little or no disability (Bouley and colleagues. ECTRIMS 2017; abstract P329). However, almost all had been taking an MS medication from the time they were diagnosed. While this estimate appeared high, the researchers suggested that starting and staying on a medication may have helped to keep these people functioning normally over the past 20 years.
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