Unlike in the "good old days" when a diagnosis of multiple sclerosis (MS) was
given and the patient was told to basically go home and go to bed, now there is
a reason for hope and a promise of a better outlook. The prognosis of being
diagnosed with MS looks better on a daily basis.|
Since first described in 1838, it took 30 years for physicians to recognize MS
as a disease. In 1900, the life expectancy of a person with MS was only five
years. Today, individuals can now live a normal life-span, though often with a
struggle and increasing limitations. It was not until after World War II that an
immunologic cause of MS was seriously investigated, and it was not until 1970
that the first positive results of treatment with an immunologic therapy
(steroids) were released. In the 1990s, disease-modifying drugs became the first
line of medications that fight MS directly.
Currently, with all of the available information, a neurologist can determine
usually with little doubt if it is or isn't MS. If there is any doubt or
uncertainty, then they can retest or have new tests run, but the certainty is
increasing as time goes on. Once a diagnosis of MS has been made or established,
there is no reason why you should have further diagnostic tests.
Once you are diagnosed, talk to your neurologist about MS treatments that can
slow down the progression of your disease, reduce relapses, and help you get
back to normal. You can also work with your neurologist to manage the common
side effects you may have from your therapy. You can also manage your MS
symptoms by making some changes in your lifestyle. A balanced diet, regular
exercise and other healthy changes to your lifestyle can give you more strength,
energy and confidence in managing your MS.
It's generally very difficult to predict the future course of MS since it varies
greatly from one individual to another. Most people with MS have a normal life
expectancy, but a few patients with very severe disability may die prematurely
of infectious complications, such as pneumonia, giving the overall life
expectancy about 95% of a normal healthy individual.
There are some guidelines that may be used to infer a prognosis. Approximately
85% of MS patients begin with the relapsing-remitting form of the disease. As
discussed earlier, MS relapses can involve a single neural system, such as optic
neuritis, or several anatomically distinct systems at the same time, like
combined motor and sensory problems. Attacks involving single neural systems are
somewhat more common in the first exacerbation of MS.
Several studies have shown that people who have fewer attacks in the first
several years after diagnosis, long intervals between attacks, complete recovery
from attacks, attacks that are sensory in nature (i.e., numbness, tingling,
visual loss), and nearly normal neurological examinations after 5 years tend to
do better. These studies have also shown that people who have early symptoms of
tremor, in-coordination, difficulty in walking, or who have frequent attacks
with incomplete recoveries, early development of neurological abnormalities, or
more lesions on MRI early on, tend to have a more progressive disease course.
Prognostic Relapse Indicators
|Relapse rate in first 2 years
||< 5 relapses
||≥ 5 relapses
|Relapse rate after 5 years
|Duration between relapses
|Number of neural systems involved
|Type of systems involved
||Visual, sensory, brainstem
||Motor, cerebellar, bowel or bladder
The first few years after your disease onset is an important time, the number
and type of relapses as well as how much of a recovery will help predict your
future disease course. Relapses that involve visual, sensory or brainstem
systems have a better prognosis than those that involve cerebellar, motor, or
sphincter systems. In the first two years of disease, a low relapse rate with
excellent recovery indicates a better prognosis than a high relapse rate with
poor recovery. Relapses that are restricted to single neural system are
prognostically better than those involving multiple systems. The relapse rate
also has prognostic significance in the later stages of MS. With a disease
duration of five or more years, an increasing relapse rate, polyregional
relapses that involved multiple systems, and incomplete recovery from relapses
indicate a worse prognosis.
It's felt that most people experience the severest disabilities of MS within
five years of diagnosis. After that point, their disabilities don't continue to
worsen significantly. Therefore, if no additional disabilities appear within the
first five years, then they are unlikely to occur in the future. But nobody can
predict what will happen to any one person and so many things can have an
influence on that. It's been proven over these short years that doing all of the
"right things" will increase your odds of a better outcome.
15 years after diagnosis, about 50% of MS patients become dependent on at least
a walking aid. The average time before having severe disability that causes
patients to be restricted in bed is around 33 years. On a brighter side, after
25 years since diagnosis, 10% remain free of major ambulatory disability as
measured by the Expanded Disability Status Scale (EDSS) even without treatment.
If an MS patient's EDSS score is 2 or lower for 10 years or longer, there is 90%
chance that the disease will continue to remain stable. This latter group
constitutes 17% of MS patients and can be designated as “benign” in an
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It needs to be noted that these many numbers and statistics are skewed and highlight
many of those who were diagnosed with MS prior to any of the disease-modifying
medications (DMTs) being available and would look are better today for those who
choose a treatment.
It also needs to be noted that benign MS doesn't designate a specific type of
disease course and is describing only mild disease severity after time. In
addition to this, while most patients have relapsing-remitting MS (RRMS), some
other patients may have a very slow progression and still remain benign. Within
the benign RRMS patients, some have multiple relapses with almost complete
recovery, and others may have a paucity of relapses or central nervous system
(CNS) inflammatory activity as evidenced by imaging studies.
Once a moderate level of disability is reached, these early clinical predictors
don't seem to influence the continued progression of irreversible disability,
suggesting that the long-term course and disability may be established early in
MS. The progressive phase in MS, regardless of the presence (secondary-progressive)
or absence (primary-progressive) of initial relapses, behaves similarly, and rapid
early progression of disability that includes three or more systems is unfavorable
in progressive MS.
As far as a specific prognosis, it basically comes down to an educated guess by
your neurologist. As with any type of experience, the more any neurologist has
seen and treated those with MS, the better that educated guess should be. By
looking at your tests, history, and what you have lost so far, your neurologist
can give you an idea of what you should expect. Time, unfortunately, is
typically the best judge of how you are doing.
Adhering to your treatment plan of using a disease-modifying therapy (DMT) is the
best possible strategy for managing your MS and giving you a far better prognosis.
By continuing the DMT your neurologist has probably placed you on is an important
part of that plan. Now because taking a DMT over a long period of time can be
challenging, it’s important to understand its role in the overall MS treatment
plan, and to be aware of the obstacles that can most often interfere with adherence
to that plan.
Currently, epidemiologists have shown that there is no evidence at all to
suggest that MS is infectious or contagious. The role of a virus or viruses, if
there is one, affects only people with a genetic predisposition to develop MS
and no others. MS within itself can't be caught, exchanged, spread, given or
even wished upon anyone no matter what you have heard. It's not like the flu or
chickenpox, in that you can't spread it to your friends or family. No matter
what type of protection one might take, there is no known prevention against it.
Mortality and Morbidity
MS causes considerable disability in the working age group of people. Those with
MS historically have died of complications rather than MS itself. Complications
have included recurrent infections especially in patients that are bedridden.
Patients with MS are thought to have an average life expectancy 5 to 7 years
shorter than that of the general population.
These figures, however, are based on an aging MS population that prior to 1992
had no disease modifying drugs to slow down progression. As the current
"younger" MS population ages, they have had access to the disease modifying
drugs and their progression should be statistically better, therefore life
expectancy should increase.
How physician's perceive the effects of MS on patients tend to differ a bit from
how those patients perceive it upon themselves. This is not to say that the many
neurologists that treat those with MS on a daily basis don't know what's
happening, but rather they haven't been in the position of living with this
disease on a daily basis. Most physician's will tend to see their patients and
evaluate their current condition using the standard measurement techniques like
magnetic resonance imaging (MRI) and a disability status scale which are
reflective of their condition.|
For the most part, physician's tend to look at clinical profiles, disease
mechanisms, and how well the patients current therapy is working. Patients will
tend to look not only at those things but will also look at how their quality of
life is and how they are doing "all around" which can't be quantified. An MS
patients quality of life can be represented by many elements including the
disease-related presence of comprehensive cognitive issues, fatigue, physical
dysfunction, pain, visual issues, emotional disturbance, and social functions.
The "ideal" neurologist would be one that not only focuses on the clinical
profile, disease mechanism, and therapeutic intervention, they would also place
a great emphasis on that patients quality of life and all of its contributing
factors. Some might feel that quality of life issues are simply cosmetic and
could distract the neurologist on the "facts" at hand, and then others might
feel that you can't really "treat" a person until you really "know" that person.
Unlike a surgeon who has the luxury of going in, fixing the problem, and then
basically walking away, a neurologist dealing with MS has no such magic wand and
is basically committed for a lifetime of treatments with their patients.
It would be logical to assume that a prognosis of one's future based solely on
specific criteria would basically be a number based on averages, but if a
prognosis were to include a persons quality of life, then the number could be
molded to each patient based on their quality of life issues. The better the
quality of life is for each patient, then the better the prognosis should be.