MS PERSPECTIVES: The History of a Prognosis

By Ed Lash

Although the description of its symptoms in the case of St. Lidwina of Holland goes back as far as the 15th century and the discovery of the disease’s characteristic neural lesions date from the earliest 19th century, the first modern clinical descriptions of multiple sclerosis (MS) were published by a noted French clinician, Jean-Martin Charcot (1825-1893), only in 1865. Charcot called the disease sclérose en plaques.

In 1946, the National MS Society was formed in the US. The International Federation of MS Societies, founded in 1967 by 17 charter members, is presently comprised of more than 200 leading neurologists and scientists from nearly 40 countries. But an important question is, “How far have we come since then?”

In the 1930s and 1940s, and even into the 1950s, statistics indicated that 30% of patients with MS had a life expectancy of only two to four years after diagnosis. Only 8% lived more than 20 years. Kidney infection, pneumonia, and pressure sores were the main complications of the disease and they were also the main causes of death. MS at that time was often characterized as unrelentingly progressive and inevitably disabling.

Today, things look brighter. Today, the life expectancy of a person with MS, except for the small group of extreme cases, is not too much different from that of the rest of the population, and MS is no longer considered to be a life- threatening disease. The latest statistics (over 10 years old and still getting better, I’m sure) tell us that two out of three people diagnosed with MS have a relatively mild course and remain ambulatory over their entire lifetimes.

When you think of it, this turn-around over the past 40 years is especially remarkable because a cure has not been found. So the question is: Why such a dramatic improvement?

There are a number of reasons, and I quote from a variety of sources:

• improved general medical care and modern diagnostic testing;
• greater knowledge of and better treatment for the many MS symptoms to prevent further complications
• effective use of antibiotics to control infection
• development of anti-inflammatory drugs to help dampen an acute attack for many people
• better knowledge in the treatment and prevention of urinary tract infections, pneumonia, and pressure sores
• availability of rehabilitative services such as physical therapy and occupational therapy
• the emphasis on active exercise, proper rest, attention to nutrition, stress management, and general health

Regarding active exercise, when I was diagnosed with MS in 1969, the left side of my body was completely paralyzed from the neck down to my toes. Fortunately, my neurologist was one of the few in those days who prescribed exercise for MS. He gave me a walking exercise program to follow even though I could only drag my left foot. Increasing my walking gradually, I was walking relatively normally in 6 months, with only a slight limp if I got tired. Today I am still walking well and regularly play golf. A number of recent research studies have proven the value of exercise for MS and the National MS Society encourages it, whether on medication or not.

What can we expect in the future? Eventually, a cure for MS, I’m sure, but most likely not a one-time breakthrough.

Research in MS throughout the world is currently progressing at an almost furious pace and the clinical yield from basic MS research has already been great in terms of understanding the disease. There is still much knowledge to be gained, however, especially in areas of management and treatment.

It is only reasonable to anticipate more progress and additional improvements in the near future even without a cure, but with more positive medical treatments as researchers learn what treatments will be effective for what types of MS. As the causes and triggers of MS become clearer, the prospects for managing it, curing it, and preventing it can only improve.

Note: Self-help is not intended to replace medical treatment. It should be used together with the help of appropriate professionals in a team effort.

Ed Lash is a United Spinal member who lives in Trumbull, Connecticut. This essay is adapted from his book, MULTIPLE SCLEROSIS, Self-help . . . A Patient’s View (Vantage Press 2001), which is available by e-mail from edlash.ms.selfhelp@juno.com, or by phone at 203-445-0118.