I've just been diagnosed with RRMS. How many people with this live with hardly any symptoms? I want to know if I do all the things my doctor has said to do is it possible that I can live 'without' MS? Is there any data showing the percentage of people that become disabled vs those that are fine?
This is a great question and, as you can expect, the answer is complicated.
Most studies on the course of MS have not addressed the prevalence and persistence of MS “symptoms” at different time points or stages; instead, they look at presence or absence of abnormalities on examination. As you may know, these examination abnormalities are only the tip of the iceberg; many symptoms and MS related problems remain hidden beneath the surface where they are not visible to either those around you or your physicians. To address this major gap in our knowledge many studies now collect patient self reports on symptoms and their impact on quality of life.
I recently published a paper on this topic in the international journal of MS care ( Kinkel RP, Laforet G, You X. Disease-related determinants of quality of life 10 years after clinically isolated syndrome International Journal of MS Care 2014 READ MORE). To address this issue we followed patients for 10 years after onset of MS and discovered the following:
- Quality of life over 10 years in those patients without recurrent attacks was identical to quality of life in healthy controls
- Residual disability was the main determinant of quality of life at 10 years; in other words the fewer your abnormalities on examination early in the course of the disease, the better you felt at 10 years
- Mental health related quality of life is related to the frequency with which people experience relapses of MS but is also determined by many other intrinsic factors unrelated to the disease process
So the key to remaining well is to make sure you are on a treatment that eliminates or minimizes, if possible, all disease activity and maintains your maximal physical and mental health. Many of the blogs on this site address how to achieve these goals.
-Rip Kinkel MD