Wednesday, October 10, 2012

Effect of Age on Prognosis

Julie Stachowiak, PhD

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.


  1. I would rather die than be totally dependent. So this research means little to me. Why would I want to live for an extra 20 years if I can't get out of bed and a problem to my loved ones? Why not find ways to make improvements in our quality of life? The CCSVI treatment has had positive results for a large group of people. Why not allow the people who would like to try have a chance to improve their lives?

    1. My thoughts exactly age of death means nothing to QUALITY of LIFE is what I think about often and is my worse fear of having MS!

    2. Absolutely i would prefer dying rather than being a burden on my family

  2. This article talked in circles.

  3. All three of the last comments all hit correct points. I was diagnosed with MS at the age of 30 in 1995. I am now 47 and have been on long term disability and Social Security disability for a year and a half and will be here for the rest of my life span.

    I have always told my wife that it is quality of life over quantity. I have no desire to be kept alive by any artificial means nor do I want to be bed ridden and non ambulatory. I spent ten years in human subjects research at UCLA. I repeatedly asked my neurologists for some type of prognostication the question was always answered as has been spoken above.

    The question is do MS specialists have a pretty good idea of what our prognosis is? My experience says yes they do. However, no one wants to tell a person living with a chronic and terminal disease what they imagine their disease course will be based on their experience. Doctors are human too and dealing with this disease is really, really tough. So the moral of the story is don't ask if you really don't want to know the answer; and two understand that while we are the ones suffering the physical maladies of this disease our physicians and care givers don't want to add to the stress and fear that comes with this devastating disease.

    I know it sounds like a cop out...but it isn't we must take control and responsibility for our own disease and for how we will cope with it long term.

  4. Julie, can you clarify a couple things? Are you interchanging the terms "diagnosis" and "onset," or do these studies make a distinction between the two? Also, is this natural history data or are DMD's accounted for in the data?

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  6. Well,you coiuld get hit by a bus. Or a blimp. This isn't living if you want to know what the future holds you aren't really living anyways?

  7. Re: Effect of Age on Progression by Julie S. phd

    I was diagnosed at age 42 and will be 64 next month. The first few years I was having an exacerbation once a year for about 2 weeks each. Then after I don't remember how many years I just started getting worse. I worked as a teachers assistant; I went from walking normally, cane, afo, 4 prong cane, walker, then power chair. After retirement due to long hospitalization with AML I retired. I'm no longer on any MS meds, (just for restless legs, spasms,) I use my walker even tho slowly because I feel I have to move. I'm in more pain now than I ever was for years but it seems nothing helps my (spasms in neck>down arm) but I paint, take classes for fun. sunday school teacher, I try to focus on something else instead of my pain.)
    Anyway, what I wanted to say was many years ago maybe 15-16? I had just started to do the experimental T-cell vaccine at Baylor in Houston. The FDA stopped it very near the time I started it.But I got to know a few Drs there who had worked with MS for years. In our conversation #1. I mentioned I never get sick or the flu yet I work with children one on one who have colds, flu, all kinds of germs.
    He said he's had ms patients comment on this before that they rarely get a cold or flu. (I'm not talking about more serious illnesses- ofcourse we can) #2 A doctor there told me that in his many years of working with ms patients that he has noticed that the later people are diagnosed with it he thought they never seemed to get as bad as people diagnosed at an earlier age. (My husband also recalls this point he made)
    But later on I mentioned this at one of those "Free" ms informational dinners (put on by the drug companies) The doctors AND the audience practically turned on me like VULTURES! They were in complete disagreement. But I was just surprised how adament they were!
    I'm not in medicine nor science but I was just relaying what some doctors had told me but it must have touched a sore spot because everyone seemed to really over react to my words, I thought.
    Regarding pain, I have found that moving or even going to physical therapy helps me- it may not stop the pain but I feel better afterword. I'd rather do PT than take anti-depressents for pain (only makes me feel worse) So maybe the doctor who said we don't have a crystal ball is right- everyone is different and maybe the way we cope with our MS is different simply to our genetics?
    I think it's better to just push forward as best we can. I am grateful
    to GOD for what I CAN do. I'm not my MS - I'm Pam who just happens to have ms.