Prognosis

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

Feature

Favorable Prognosis

Unfavorable Prognosis

Relapse rate in first 2 years

< 5 relapses

≥ 5 relapses

Relapse rate after 5 years

No increase

Increasing

Duration between relapses

Long

Short

Number of neural systems involved

One

Multiple

Relapse recovery

Complete

Incomplete

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 ambulatory sense.

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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.

Not Contagious

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.

Physician's

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.