Mastering Multiple Sclerosis
A Guide To Management

The Prognosis Of Multiple Sclerosis

ch19
p346

We physicians do not usually talk about the prognosis of MS. We have been taught that it is unpredictable. This belief probably reflects the unpredictable timing of the next exacerbation.

Actually, to a large degree the general course of MS is predictable, even though exacerbations are not, there is a wide spectrum of severity among MSers. About 20% have a mild course.

Some remain stable for many years. Progression in most cases is slow enough so that MSers can adjust and continue to live productive lives.

For the 10 - 15% who have rapidly Progressive MS, it is a terrible disease. But painful as it may be, even rapidly progressive disability is easier to bear if you plan for it.

p347

Computed Predictability With Torben Fog

Two major studies of long term prognosis require careful examination. The first was published in 1970 by Torben Fog, who followed 73 MSers at regular intervals over a period of years.

He recorded the results of examinations on a numerical scale and graphed a disability score. On his graphs, exacerbations appear as sudden peaks in a line that showed a long term predictable course.

Some of Fog's patients rapidly became disabled. Others maintained stable disability scores over many years.

None showed sudden changes in the overall course of the illness. Fog graphed his disability scores and entered the results into a computer.

It drew lines of progression similar to those illustrated in the figures. He then asked the computer two questions:

1. Based on the course as observed, what was the date of onset?
   • The computer's analysis matched the patient's histories.

2. Based on the past history of progression, what will the disability score be in three years?
   • In 91% of cases, the computer's prediction was accurate.

Some of Fog's graphs display steady progression. Others follow an exponential course, usually accelerating with the passage of time.

In a few cases, Fog's exponential curve showed rapid progression at the onset of the disease which stabilized with time that is, the MS stopped progressing.

Fog's results indicate that MSers may not be able to make straight line predictions for the next 20 years, because the course may accelerate in the future.

However, Fog did show that it is possible to predict for several years ahead, because MS does not change its course suddenly.

He dispelled two other false beliefs: That MS prognosis is determined by severity and frequency of exacerbations, and that prognosis is affected by age of onset.

p349

1 - MS Exacerbations Do Not Determine Prognosis

Acute exacerbations have always been the most dramatic feature of MS. Because we think primarily in terms of exacerbations we believe they cause the progression of disability.

Fog's graphs show that this is false: disability scores continued to change between attacks. After an attack, the disability score returned to the baseline of the progression curve, proving that attacks do not determine the overall severity of the disease.

2 - Age Of Onset Does Not Determine Prognosis

Fog also confirmed the belief that late onset MS (after 35) has fewer exacerbations and remissions. More often such patients have stedily progressive symptoms without exacerbations, but their prognosis was the same!

Since exacerbations do not cause progression, older MSers can relax a little. Unlike younger MSers, they will not have sudden exacerbations, nor are they more likely to suffer rapidly progressing disability.

p350

The Veteran Administration's Study
Confirms Fog's Findings

After careful screening to be certain they really had MS, male Army personnel were accepted into the study if they had been diagnosed while on active duty between 1942 and 1951.

Their lives have provided very important information about the natural course of MS. Four major conclusions bear directly on prognosis.

1 - Only The Previous MS Course Has Predictive Value

Like Fog, Neurologist who supervised the VA study developed a numerical disability score. MSers in the study were questioned and examined at five year intervals after their first symptoms.

Many factors were analyzed in the hope of discovering which ones might be predictive of later disability.

Of all the factors examined only one was important: the disability score at the fifth year. Subjects who had minimal disability at the end of five years continued on a Benign course.

Those with severe disability at five years continued to have severe and progressive disability for the rest of their lives.

This result is similar to Fog's. The difference is that Fog recognized the possibility of both acceleration and deceleration of progression.

These two studies indicate that if you are in the first year or so of the illness, you do not yet have enough information to make an accurate prediction.

They also demonstrate that if you are a senior MSer, you may use your experience. How much disability do you have now? How much did you have several years ago?

Consider the specific things you can no longer do, as well as the general course of the illness. Then look ahead a few years to estimate your own prognosis.

p351

2 - Symptoms Have No Predicitive Value

Doctors and patients worry unnecessarily about the frequency of attacks in early years and about peak severity of individual attacks.

If bowels and bladder or if BrainStem structures are involved, we shake our heads in dismay.

The VA's study showed that the degree of disability during an attack, the frequency of attacks and specific symptoms during attacks, are of no importance in the long term prediction of disability scores.

Therefore if you are caught in the midst of an attack that seems never to end and if you have previously experienced good remissions after other exacerbations, take courage.

From that experience you can predict eventual remission this time too, knowing that only the progress of your baseline disability determines the prognosis.

3 - A Definite Prognosis For MS Symptoms

It is cold comfort to the MSer caught in a seemingly endless attack, to know that disability progresses independently of each and every attack.

At that moment there are much more important questions: How long will this attack last? How permanent are these symptoms? Can someone predict the eventual outcome of this attack?

p352

There is no specific answer for an individual attack, but statistical information may be useful. The VA's study asked: What is the prognosis of individual symptoms that have been present for two years or less?

After considering many factors, he found that only the duration of a symptom determined the statistical chance of its disappearance:

1. If a symptom has been present for only a week, there is an 85% chance that it will go away.

2. If it has been present for a month, there is a 38% chance of disappearance.

3. Symptoms present for two years or more are probably permanent.

p353

These statistics parallel the daily experience of MSers. They have "bad days" when a leg refuses to walk properly or fatigue turns into exhaustion. On such a day the MSer can look to tomorrow with fair assurance that it will be better.

MSers usually do not call the doctor to report an exacerbation untill a new symptom has persisted for a week or more, and is accompanied by other symptoms that indicate this is not merely a "bad week".

This hesitation may be an unwillingness to admit to another exacerbaation. However, it is more likely the result of past experience with symptoms that went away on their own.

4 - Optic Neuritis Is Not A Sure Sign Of MS

Many patients with Optic Neuritis have been told that they have a 30 - 50% chance of getting MS. The VA's study demonstrated the risk is less.

Army personnel who developed only Optic Neuritis while on active duty were included in this study. Excluded were those who developed Optic Neuritis and other Neurological symptoms and those who developed a second bout of Optic Neuritis within a few weeks of the first.

Optic Neuritis, associated with other Neurological symptoms and repeated Optic Neuritis, are common early symptoms of MS.

After 12 to 18 years of observation, only 12% of the study group had developed Clinically Definite Multiple Sclerosis.

By projecting their data into the future, the authors expected that a maximum of 19% of the patients with isolated Optic Neuritis would develop MS.

The significance and even the basic nature of Optic Neuritis continues to be controversial. Two brief articles outline the issues. Each has an extensive bibliography to lead you further into the literature.

The VA's study was an enormous and comprehensive examination, of the natural history of MS. I have presented only those parts that deal with prognosis.

If you wish to read the rest of the VA study, your librarian can help you find other articles in the series.

Weather & Body Temperature Have Predictable Effects On MS

p354

Weather and climate have little effect on the long term course of MS. However, the weather affects the well-being of many MSers. Spring and summer are hard times.

When the weather begins to change in May, Neurologists' phones begin to ring. MSers have deteriorated. They are tired and walk poorly. They have more flexor spasms.

They wonder if this is another attack. A second epidemic of exhaustion occurs in July and August when the summer heat beats down.

Increase in body temperature is such an adverse factor for MSers that in former years the hot water bath became a diagnostic test.

On the other hand, too cool a body temperature may also aggravate muscle spasms and interfere with walking because of increased Spasticity.

Such functional changes last longer than the one afternoon of being overheated or chilled, but they do not represent an acute exacerbation of MS.

During hot weather or during an illness accompanied by fever, Msers should try to stay cool. Use air conditioners, frequent dips in a swimming pool or a cool bath.

If necessary, take Aspirin or Tylenol to reduce fever, and AntiBiotics to eradicate bacterial infections. If overcooling in winter worsens spasms, dress more warmly, exercise more and use more of the AntiSpastic medication.

p356

Summary

There is no choice about the future course of this illness. But we have many choices, about how we manage its symptoms and our lives. MSers can plan ahead to cope with individual disabling symptoms as they arise. If your disease has progressed very rapidly, you can plan how you will respond to advancing disability.

If your job is threatened during an attack of MS and you know that the progress of your disease is slow or moderate, you have statistics to help you fight harder to keep your job.

You can plan in your younger years to be a capable spouse and parent despite changing symptoms and changing family needs.

Healthy or sick, we all have the same problem: management. Healthy people must learn to manage the progressive disabilities of aging.

MSers must learn to manage the combination of aging and MS. I have no illusions that even the best regimens and brighest of ideas can offer perfection.

However, if ideas about management allow you to remain an active productive citizen despite having Multiple Sclerosis, you have been sucessful!