Multiple sclerosis is not considered a terminal condition. But it is a life-long condition. Long-term studies show that MS does reduce life expectancy. But the impact on life expectancy is only small for most people. Many people with MS live for as long as the general population.
Studies on the effect of MS on life expectancy have been carried out in several countries. The results from these studies suggest that, on average, having MS reduces your life expectancy by six to seven years. This gap is closing all the time.
Life expectancy for people with MS varies depending on the level of disability they have developed. For those with an Expanded Disability Status Scale (EDSS) score of 7.0 or less, life expectancy is only slightly reduced. Those living with more complex disability are more vulnerable to other conditions or comorbidities. This includes heart problems, breathing issues and pneumonia. These other health problems contribute to a lower life expectancy. Even when those with more complex MS are included, overall life expectancy is still only reduced by six to seven years.
Disease modifying drugs (DMDs) for relapsing remitting MS only became available in the mid-1990s. Many of the people included in studies used to calculate life expectancy would not have had access to these treatments. DMDs are thought to reduce the risk of inflammatory damage to the brain and spinal cord. So, it is assumed that being on a DMD would slow down the rate at which disability worsens.
In the future, it may be that long-term studies show that life expectancy increases because of these drugs. Indeed, a recent study in Tuscany in Italy suggested that life expectancy of people with MS has improved over the treatment era.
A study published in 2023 that followed people with relapsing remitting MS who had been taking a beta interferon. Taking the drug for more than three years was associated with increased life expectancy.
More effective DMDs have become available. So, the gap between people with MS and the general population will hopefully close further and the extra years of life will be of a higher quality.
Research into life expectancy in MS has used different populations and data sources. Here are short summaries of some recent research. You can find links to the original papers in the references section below.
A Canadian study looked at life expectancy in people whose experience of MS ranged from no symptoms to full time use of a manual wheelchair. It found that in those with an EDSS of 7.0 or less, life expectancy was only slightly reduced. The research found that people with more complex disability (EDSS greater than or equal to 7.5) were more at risk of complications. Comorbidities like stroke and vascular issues affected the overall life expectancy figures. Even with this group included, overall life expectancy for people with MS was only six to seven years less than that of the general population.
This effect has been seen in other studies of health insurance records. For instance, an American study of data collected between 1996 and 2009, and a Canadian study with records from 1984 to 2012, both found that life expectancy was on average six years less for people with multiple sclerosis.
A Norwegian study found that life expectancy in people with MS is increasing at the same rate as that seen in the general population. Overall, life expectancy was seven years less than people who didn't have MS (74.7 years vs 81.8 years). The life expectancy for people with relapsing remitting MS was longer than for those with primary progressive MS (77.8 years vs 71.5 years).
Researchers in New Zealand analysed data to see if life expectancy was reduced to the same extent in the southern hemisphere. On average, New Zealanders with MS live for 7.2 years less than the general population (79.4 years vs 86.6 years). Those with an earlier age of onset (21-30 years) lived on average for 9.8 years less. Those with relapse onset disease lived on average for 5.7 years less, whilst those with progressive onset MS lived for 9 years less.
An Italian group compared people with MS in Tuscany to an age- and sex-matched group from the same area over 17 years. 68 in 100 of those with MS had taken a DMD during the study period. Nearly 9 in 10 had relapsing remitting MS. The mortality rates did not differ between those with MS and the control group. They concluded that life expectancy of people with MS has improved during the treatment era.
