In the past, I have begged the various neurologists that have treated me to tell me what was going to happen to me in terms of MS disability. Understandably, the docs were reluctant to give me a firm answer, instead giving the "MS is different for everyone" line. My favorite neurologist would see through all of my tactics to get these answers and always told me the same thing: "Oh, no, Julie. I am sorry. I seem to have left my crystal ball at home today."
Now, I understand and support the neurologists who refuse to predict what is going to happen to an individual with MS. It is impossible to foresee the disease course of a specific person. However, new research is being done that gives an idea of the overall likelihood of disability and age of mortality based on certain factors, such as age.
It is accepted among MS researchers and doctors that the older that people are when they are diagnosed with MS, the more quickly they progress to a score of 6.0 on the Expanded Disability Status Scale (EDSS), which is the point in which assistance is needed to walk. People that are diagnosed later in life also tend to die sooner after diagnosis.
However, I attended a session at ECTRIMS 2012 in which Helen Tremlett of the University of British Columbia, Vancouver, presented data that may call this assumption of “age at diagnosis equals worse MS outcomes” into question.
Looking at the British Columbia MS database, which has data on an estimated 80% of people living with MS in British Columbia, Dr. Tremlett found the following:
It was true that people developing MS earlier in life progressed to disability (EDSS of 6.0) much more slowly than those diagnosed at a later age. In one study, people 16 years old or younger at MS onset progressed to EDSS of 6.0 in 28.9 years on average, while people older than 16 at disease onset reached this point in an average of 19.7 years.
However, in this same study, people diagnosed at age 16 or younger tended to reach a sustained EDSS score of 6.0 earlier in life (average age 42.2) compared to people who were older at MS onset, who were 50.5 years when they needed assistance walking.
In Dr. Tremlett's research on age of MS onset and mortality, people who developed MS before age 20 lived on average an additional 58.2 years, while those who had MS onset after 40 lived an additional 31.3 years.
However, those who were younger at MS onset tended to die at a slightly younger age than those who developed MS at a later age. For instance, those who developed MS younger than 20 lived to be an average of 77.7 years, while those who developed MS after age 40 lived to be 78.9 years. Average survival time of people diagnosed between 20 and 40 years of age was 74 years of age.
In other words, a younger age at MS onset did mean that people lived longer with MS and tended to have slower disability progression from the time that they had symptoms or were diagnosed. However, looking at absolute age, those who were younger at disease onset tended to accumulate disability earlier in life and die at a younger age.
What does this research mean to me?
Remember, the ages for sustained disability and mortality are averages, meaning for some people it all happens faster and many people live much longer before needing assistance to walk. In fact, many people with MS will not need assistance to walk because of their MS. This is a difficult statistic to figure out over a lifetime, because at some point in life people may need assistance to walk for age-related mobility issues.
Overall, survival rates were 6 years less among people with MS than in the general population. Again, remember that these are averages.