by Ed Lash

Multiple sclerosis (MS) is often described as a mystery disease. One of the mysteries is the exact cause of MS. With the evidence we have today, the likely cause is considered to be a combination of complex factors which include genetics, environmental influences, probably early childhood diseases, and possibly other unknown factors. But rather than using the word “cause,” many authorities suggest that this combination of factors gives us a “predisposition” for MS.

Having a predisposition for MS, however, does not necessarily mean that a person will “get” MS. In order for MS to manifest itself, an additional precipitating factor or factors need to be present. This precipitating factor can be called a “trigger.” The Multiple Sclerosis Handbook, (National MS Society), puts it this way: “Here it is important to recognize that the occurrence of an attack is most likely based upon an alteration of the patient’s immune system which normally protects him against infection. Stresses such as concurrent illness, fatigue, severe losses, and so forth, can compromise this defense system and lead to an MS attack.”

Physiological Triggers

In Multiple Sclerosis, A Guide for Patients and Their Families (Scheinberg), neurologist Dr. Charles M. Poser states, “In addition to the fact that temperature elevation produces symptoms, other physiological disturbances (such as alterations in water and ion metabolism caused, for example, by vomiting and diarrhea) may similarly lead to the appearance of symptoms. Physical trauma, undue fatigue, and, most significantly, psychological stress may play an important role, through yet unknown mechanisms, in bringing out exacerbations. Because of this, hospitalization or even simple bed rest, and thus removal from the daily stress of work and home, may lead to the disappearance of often serious symptoms.”

The 1982 edition of Therapeutic Claims in Multiple Sclerosis (International Federation of Multiple Sclerosis Societies) says, “Many patients experience transient worsening of symptoms when exposed to heat or fever, fatigue, or emotional stress,” while the 1988 edition adds “allergic reaction” as a trigger. The 1988 edition also states that two large studies of patients with MS “have now confirmed the fact that almost one-third of new attacks of MS occur after a cold, influenza, or other common viral illness. The risk, however, of developing MS with any single virus-like illness is low––about 8% to 9%, suggesting that all viruses may not have this effect.” It may also suggest that other factors need to be present together with a viral attack.

Stress as a Trigger

MS symptoms themselves can become a source of physiological stress and act as their own trigger to perpetuate an exacerbation. One such symptom, occurring by chance in a small number of MS cases, is the lack of perspiration. This may cause a chronic, low-level fever which may be difficult to cope with under some circumstances, although many people do cope well with this issue through awareness and education, and by taking continual defensive measures to keep their body temperature normal.

Even lesser symptoms may present a great deal of stress to some people. Sometimes an identical symptom in two people is accepted as merely a simple nuisance by one, but a great source of stress and anxiety by the other. This implies that attitude may sometimes influence MS. It’s important for us to understand our personal symptoms so that we can take defensive or compensatory action to minimize their effect on our personal brand of MS. Education, support, and stress relief may be valuable considerations.

Drug side affects may also be a factor to some. Treatment with prednisone, for example, may result in significant weight gain in some people, adding to their problems with increased fatigue, weakness, or lethargy. In addition, muscle relaxants, such as baclofen (Leoresal), diazepam, tizanidine, and dantrolene, are used to alleviate spasticity but, as such, may also make a person feel weaker––especially at too high a dose. (Muscle relaxants are generally recommended only when a person’s gait disorder is secondary in importance to spasticity.) Prednisone, baclofen, and other medications may also worsen bladder problems.

Additional triggers mentioned in various sources include bladder or other infections, surgery, “burning the candle at both ends,” sensitivity to the cold, and more. Although it’s not always possible to find the precise trigger for a particular flare-up, I’m sure many of us can add to the list from personal experience.

Be Your Own Detective

MS is not only a mystery, but a baffling one as to personal triggers, and sometimes requires us to be our own detective. In my own case, I’m not as sensitive to the heat as many other people with MS are, although I had been for about 18 months while still recuperating from my bad attack 31 years ago. After several more years, however, as part of my program to keep physically fit, I got into the habit of walking a mile and a half almost every day, plus walking 18 holes of weekly golf throughout the year, including the hot summer months, with no problems. But a few years later I had a flare-up within an hour after playing golf on a hot summer day. The symptoms laid me up for a day, then tapered off after a few more days.

The following week, as you can imagine, I golfed somewhat apprehensively, but fortunately, with no incident. I continued to play throughout the year and everything was fine for a couple of more years. Then, the same thing happened after golf one hot summer day while on vacation––different symptoms, different golf course, but similar circumstances. It was then that I was able to figure out why.

Both golf courses had no drinking water out on the course, and both times we decided not to stop for a soda at the half-way house or after finishing 18 holes. It was not only the hot weather, it was the fact that I had become dehydrated. Dehydration means no water for the sweat glands; no sweating means a rise in body temperature; and a rise in body temperature signals the immune system to become more active, a circumstance which is known to trigger a flare-up of MS. You can bet that now I take plenty of drinking water with me whenever I play golf, even in cooler weather, and I’ve been fine for quite a number of years since.

Hobbies as Medicine

Aside from the fact that triggers may be different for each one of us, it’s also important to understand that it may take a combination of more than one trigger to be present simultaneously (i.e., stress piled upon stress) to bring on an MS flare-up or exacerbation. And it certainly does not mean we need to fear those above-listed life events, but it does mean we should stay in at least reasonably good condition and not allow ourselves to get run down in order to help our bodies to be better prepared to handle them if, and when, they do occur. There is usually little we can do about the physiological and emotional stress that enters our lives, but there is much we can do to avoid the harmful effects of that stress.

Statistics have shown that two out of three people with MS have a relatively mild course and remain ambulatory over their entire lifetimes. This seems to indicate that because MS has no cure or specific treatment at this time, it does not mean that it cannot be managed. The best strategy for success seems to be to learn how to control it with good medical care and by altering
behavior that contributes to MS and its symptoms. Things to consider: physical conditioning (without exhaustion); good sleep habits; attention to nutrition; moderation for perfectionists and over-achievers; relaxation techniques when and where appropriate; stress-management and/or psychological counseling, if required; a reasonably calm and cheerful attitude at all times (I hope that prompted you to smile!); the avoidance of toxins and stimulants that mimic the effects of stress; and the active pursuit of interests, hobbies, and social or recreational activities.

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

Ed Lash is a United Spinal member who lives in Trumbull, Connecticut. This essay is excerpted from his book, Multiple Sclerosis: Self-help . . . A Patient’s View (Vantage Press 2001). It is available for $16—$13.95 plus $2.05 for S&H— from www.msselfhelp.net, or by phone at 203-445-0118.