What's it going to do to me?
So what will multiple sclerosis do me?
This is a subject that is rarely brought up on the forums that I have frequented and it's also something that is hard to elucidate from Internet sources. I guess this is partly because a lot of people deal with MS by living in the present - there's no point dwelling on an unpredictable future if you can make the present into a good place to be. However the main reason that it's hard to get hold of any forecasts for the course of MS, is that it is, by its very nature, unpredictable.
Predicting multiple sclerosis is like forecasting the British weather. If you've spent much time on these islands you'll understand how fickle the weather here can be. Weathermen can only give the vaguest of indications of how things may turn out and, even then, only for the next few days. MS is similar - you can say that a number of factors are correlated with a poorer disease outcome but not with a great degree of certainty. Long-term benign disease courses can suddenly become progressive just as malignant courses can suddenly reach plateaux. With MS, nothing is certain.
Before delving into which indicators statistically lead to better or poorer outcomes, I would like to emphasise that these results are derived from statistics, and, as I shall demonstrate later, statistics should always be taken with a healthy measure of scepticism. See my section on MS and statistics. Furthermore, the inputs to these statistics are unquestionably non-parametric and multivariate and as such especially liable to error. This is born out by the results in the prognostic studies - some of which flatly contradict others and only a few indicators of disease outcome are common to all the studies.
Additionally, because of the perverse nature of this disease, you cannot say with any degree of certainty that, even if you match with some of the negative factors, that MS is going to be malignant for you. For example, there are plenty of men who have a benign disease course and yet, statistically, male sex is one of the factors correlated with relatively a fast progression. Remember also that 75% of PwMS will never need to use a wheelchair and that the majority of us will not die from MS, either directly or indirectly.
It is important to note that most of the studies, from which I draw my data from in this section, were conducted before the so-called ABC treatments (see next section) were in common usage. The effects that these drugs will have on long-term prognosis are not clearly defined, but it is safe bet that they will generally improve the disease course for people who use them. Furthermore, there is a vast amount of research work going on at the moment, which will, in all likelihood, result in treatments that will further improve the prognosis. It's an odd thing to say, but there's never been a better time to be diagnosed with multiple sclerosis.
My own personal philosophy that there is little point dwelling on potential futures because the present is where you are at just right now. Don't miss out on that. We are all mortal whether or not you have MS. Take whatever actions you can to slowdown the progression of the disease and then get on with living. As one wise PwMS said, "Hope for the best, but prepare for the worst".
Stop waffling, tell me what these indicators are!
Factors indicative of a benign disease course:
Most people's disease course lies somewhere in between benign and malignant and a person's disease may have features that belong to both sets of indicators.
In general, it seems that one of the better indicators of an individual's future disease course is their past disease course. If your disease progression has been slow so far, then it will be more likely to continue to be slow than if it has been aggressive in the past.
The Expanded Disability Status Scale (EDSS) scale
It may be useful to describe the Expanded Disability Status Scale (EDSS) at this point.
The EDSS is a method to evaluate a person's disability numerically. The Kurtze EDSS is now accepted as the standard scale and has replaced previous scales because it gives a more even spread of disabilities. Previous scales used to bunch people up in the lower brackets.
A patient is evaluated on the EDSS according to signs and symptoms observed during a standard neurological examination. These clinical observations are classified in Functional Systems (FS). There are eight Functional Systems, each of them grading signs and symptoms for different neurological functions. The eight FS are pyramidal, cerebellar, brainstem, sensory, bowel and bladder, visual, cerebral, and other.
Disability Status Scale
|0.0||Normal neurological examination|
|1.0||No disability, minimal signs in one FS|
|1.5||No disability, minimal signs in more than one FS|
|2.0||Minimal disability in one FS|
|2.5||Mild disability in one FS or minimal disability in two FS|
|3.0||Moderate disability in one FS, or mild disability in three or four FS. Fully ambulatory|
|3.5||Fully ambulatory but with moderate disability in one FS and more than minimal disability in several others|
|4.0||Fully ambulatory without aid, self-sufficient, up and about some 12 hours a day despite relatively severe disability; able to walk without aid or rest some 500 meters|
|4.5||Fully ambulatory without aid, up and about much of the day, able to work a full day, may otherwise have some limitation of full activity or require minimal assistance; characterized by relatively severe disability; able to walk without aid or rest some 300 meters.|
|5.0||Ambulatory without aid or rest for about 200 meters; disability severe enough to impair full daily activities (work a full day without special provisions)|
|5.5||Ambulatory without aid or rest for about 100 meters; disability severe enough to preclude full daily activities|
|6.0||Intermittent or unilateral constant assistance (cane, crutch, brace) required to walk about 100 meters with or without resting|
|6.5||Constant bilateral assistance (canes, crutches, braces) required to walk about 20 meters without resting|
|7.0||Unable to walk beyond approximately five meters even with aid, essentially restricted to wheelchair; wheels self in standard wheelchair and transfers alone; up and about in wheelchair some 12 hours a day|
|7.5||Unable to take more than a few steps; restricted to wheelchair; may need aid in transfer; wheels self but cannot carry on in standard wheelchair a full day; May require motorized wheelchair|
|8.0||Essentially restricted to bed or chair or perambulated in wheelchair, but may be out of bed itself much of the day; retains many self-care functions; generally has effective use of arms|
|8.5||Essentially restricted to bed much of day; has some effective use of arms retains some self care functions|
|9.0||Confined to bed; can still communicate and eat.|
|9.5||Totally helpless bed patient; unable to communicate effectively or eat/swallow|
What is the typical course of MS?
There really is no typical course for this disease. Everyone's disease is different and unique to them. However, despite the unpredictable nature of MS, one can identify different phases of the relapsing-remitting (RRMS) and secondary progressive (SPMS) forms of the disease.
See this diagram (after June Halper, 2001):
... and this diagram (after several authors including Compston and Coles, 2002):
Here, we can see that during the early phases of the disease there are inflammatory lesions but these don't produce any symptoms. Neither the neurologist nor the person with MS is aware anything is wrong unless an MRI scan is done. This phase is known as asymptomatic MS. Some people's disease never progresses beyond this phase and it is only recognised that they ever had MS from autopsy. Some researchers estimate that as many as 40% of all people with MS have asymptomatic multiple sclerosis.
As the disease progresses to the relapsing-remitting phase, some of the inflammatory attacks start to produce symptoms - these are the relapses - although most inflammatory lesions still fall below a clinical threshold. These silent lesions outnumber symptomatic lesions in a ratio of 25:1. Again, for some people, MS never progresses beyond this phase.
As time goes by, remission from relapses becomes incomplete and the person with MS is left with some residual deficits. This phase is known as worsening relapsing-remitting MS.
Typically, worsening RRMS is followed by secondary-progressive MS. During this phase, there are still inflammatory relapses, but in between there is a gradual worsening of symptoms. The onset of SPMS is when disability really begins to take hold as when people start to slide down the EDSS scale. As a rule of thumb, most people with RRMS have an EDSS of 3.0 or less whereas most people with SPMS have an EDSS greater than this.
During the whole course of the disease, inflammatory attacks become less and less frequent. Despite this, people with SPMS continue to deteriorate and eventually move into a secondary progressive phase where there are no more relapses.
Although it isn't possible to predict whether or at what rate any indivual will move through these phases, the following graph shows the average time spent at each EDSS level across a sample population of people with MS:
The average (mean) age of onset is thirty years old for relapsing/remitting and thirty-seven years old for primary progressive. The mean relapse rate ranges from approximately 0.5 to 0.8 relapses per year and decreases with time. Most people will recover from relapses within 4 weeks.
Mean EDSS levels
of Multiple Sclerosis patients after fifteen and twenty-five years.
|Fifteen Years||Twenty Five Years|
|EDSS level less than 3||
|EDSS level from 3 to less than 6||
|EDSS level from 6 to less than 8||
|EDSS level from 8 to less than 10||
|EDSS level of 10||
symptoms at presentation and during course (after Poser et al 1979).
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