5 signs that you’ll do well
One of the challenges of living with multiple sclerosis is living with uncertainty. Will I have a relapse? How severe will the symptoms be? Will I develop disability?
In many areas of medicine, prognostic factors have been identified that indicate with some degree of certainty how someone will fare over the long term, but the signs and symptoms of MS make for unreliable guides. Some people with frequent relapses do well; others with infrequent relapses do badly. Perhaps most importantly, the relative importance of individual prognostic factors – inflammatory activity in the brain, age, sex, genetics, and so on – isn’t known.
Historical studies have analysed large databases of people with MS in an attempt to isolate key events in the disease course, and identify when people will reach certain milestones, such as needing a cane or a wheelchair. However, population studies can only reveal probabilities, when what is needed are good predictions that are as individualized as the people themselves.
Moreover, the information obtained from old databases about the disease course is largely irrelevant today. Too much has changed. Perhaps the most important difference is that MS can now be diagnosed earlier. This is because MRIs are routinely used, the current diagnostic criteria now include people who weren’t considered previously to have MS, and people are better informed about MS and may be more likely to report their symptoms to a doctor. The development of treatments over the past two decades has also contributed. People are more likely to report an MS symptom (and a doctor is arguably more likely to diagnose MS) if something can be done about it.
Another issue is that older studies looked at the “natural history” of MS, meaning how MS develops in its natural, untreated state. So this information won’t reveal much about how the many people on an MS treatment will do over the longer term.
Two recent studies have attempted to address some of these shortfalls to see how people fare in the more modern era of drug treatment. The first looked at a group of about 800 people in Austria over a 10-year period (Bsteh and colleagues. PLoS One 2016;11: e0158978). The second study included a group of about 500 people in Canada over the past 10 years (Hum and colleagues. Mult Scler 2016; epublished June 30, 2016)
The following is a list of five factors identified in these studies that suggest you will do well over the longer term.
1. You were diagnosed before the age of 30. In the Austrian study, those who developed less disability were diagnosed on average at age 27 – about 3-5 years earlier than those who developed moderate or severe disability. In contrast, primary-progressive MS is typically diagnosed when the person is in his/her late 30s. This may suggest that a proportion of people weren’t caught early and were only diagnosed after their disease had worsened; or that the underlying disease processes in PPMS are somewhat different than they are for relapsing-remitting MS.
In the Canadian study, 84% of people developed little or no disability over a 10-year period. Perhaps the most important determinant of how well they did was how early they were diagnosed – 15% had early signs suggestive of MS (but didn’t have MS yet), and the remainder had relapsing-remitting MS.
2. Your initial MS symptoms were sensory or visual. The most common initial symptoms in the Austrian study were sensory (tingling, numbness) or visual (e.g. blurred vision), and these generally bode well. However, about 10% of people had early pyramidal symptoms (e.g. partial paralysis), and this was a bad sign. Pyramidal problems can be shown with the Babinski reflex – the big toe goes up and the toes fan out when the sole of your foot is stroked (the normal reflex is for the toes to curl down).
3. You didn’t have different types of symptoms. MS can affect different functional systems (as neurologists term them), such as sensory (tingling, pain), motor (muscle movement and strength), visual (blurriness), cerebellar (poor coordination), bowel and bladder, and so on. People with only one category of symptoms at the start of their MS are much more likely to do better over the long run. This is probably a reflection of how widespread is the damage caused by MS in the central nervous system.
4. You fully recovered from your initial relapses. The disability that occurs in MS is due in part to the damage that occurs. But another important determinant is how well you heal. While it isn’t known why some people heal better than others, those who fully recover their nerve function after an MS attack do better over the long term.
5. You didn’t have another relapse for several years. The number of relapses you have in the first five years after being diagnosed has some prognostic value. But over the longer term, the number of relapses loses its predictive value, in part because relapses become less frequent over time in everyone with MS. In the Austrian study, people who developed mild disability had an average of 3-4 relapses over a 10-year period, compared to 5 or more relapses in the groups with moderate or severity disability. After 10 years, only 2-3% of people with mild disability worsened to secondary-progressive MS.
There are many factors – known and unknown – that will affect how well an individual with MS will do over the lifelong course of MS. An important need in MS research is to fine-tune the prognostic factors. Eliminating some of the uncertainty would help people make a more realistic assessment of how well they’ll do, so they could take the appropriate steps to reduce their chances of disability.
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