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Multiple Sclerosis and Your Emotions
by Mary Eve Sanford, PhD, and Jack H. Petajan, MD

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THE SPECIAL EMOTIONAL
STRESSES OF MS

In addition to the emotional stresses that apply to anyone with a chronic illness, there are some characteristics of MS that create special emotional burdens.

Lack of a definite diagnosis
The diagnosis of MS may be a lengthy process. Physicians may not have enough information to make a definitive diagnosis, even when MS is a very real possibility. This is due to the erratic nature of the illness and the fact that no single specific medical test exists to confirm or rule out MS.

For some people, a diagnosis after months or years of symptoms is a relief: “At last I know what I have.” For others, it comes as a terrible shock. Both reactions are entirely normal.

The unpredictability factor
Even when a diagnosis is made, uncertainty isn’t over. The course of MS is always unpredictable: People living with MS are aware that their symptoms can improve or suddenly get worse at any time. Unpredictability may be somewhat easier to deal with if it is anticipated—if people make alternative plans, “just in case.” Discussing one’s individual prognosis or expected future with a neurologist may also help ease some fears.

When chronic illness is diagnosed, some people think of the future in statistical terms, saying, for example, “I have a 50 percent chance of this or that.” In one’s mind, such predictions soon become fact. But only the present is real. No one can truly predict the future. Furthermore, new treatments for MS make past experience unreliable. The future is unknown and today it is full of hopeful signs.

The invisible symptom factor
Symptoms such as fatigue and weakness are invisible. They can occur without a person showing obvious signs of illness. When this happens, family and friends often expect too much from the person with MS. MS fatigue is frequently perceived as laziness or lack of initiative. Under such pressures, it is not uncommon for people with MS to doubt themselves.

Sharing these feelings with others who have MS and learning their coping strategies can be very helpful. As one person with MS said, “Don’t let others ‘should’ on you.”

Making decisions about treatment
A number of “disease-modifying” drugs have been shown to limit the number of relapses, or attacks, to limit the number of lesions, or areas of damage, seen by MRI within the central nervous system, and may slow the progression of MS. The National MS Society Medical Advisory Board has issued a Disease Management Consensus Statement advising that most people who have a definite diagnosis of a relapsing form of MS should begin treatment with one of these drugs as soon as possible. The Consensus Statement is available from Society chapter offices or online at: main.nationalmssociety.org/.

This good news about treatment options poses a new challenge to people with MS. The benefits of these medications are sometimes hard to see as the drugs may have little effect on the way people experience daily MS symptoms. But people who stay with their treatment will be doing all they can to minimize the long-term progression of their disease.

 

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MS AND THE MIND

Cognitive effects of MS
At least half of all people with MS notice some changes in their mental abilities or cognitive function. These might include problems with memory and problem solving, as well as difficulties processing information quickly and using language.

A person may have trouble comprehending information that is presented too rapidly. These changes can interfere with work, social life, and everyday activities.

There are many ways to cope with these problems. Some people make lists of things to be done or remembered. They allow more time for demanding tasks. They accept some help from others. Some people find it helpful to visualize what’s on tomorrow’s agenda. Most of all, people learn a sense of proportion about daily life. In other words, they don’t sweat the small stuff.

Sometimes medication can reduce fatigue and increase attentiveness. A neuropsychologist can test cognitive functioning to determine where the problems lie and suggest specific strategies for coping more effectively.

Mood swings and MS
People with MS sometimes express emotions in an exaggerated manner. A person may laugh or cry more easily than before. A sad comment may cause tears. A joke may induce uncontrolled laughter. These exaggerated emotions can occur because of MS changes in the brain. The medical term is “pseudobulbar effect”.

People with MS may also experience abrupt mood changes. They may go from calm and happy to upset and angry on a hair trigger. These rapid mood swings, sometimes called “emotional lability”, can also be traced to MS changes or they can be triggered by medications, such as high-dose steroids.

It’s important to recognize that abrupt changes in mood or inappropriate emotional responses are very likely to be MS problems. Medications can be effective for some people. For others, counseling and coping strategies prove useful. An open discussion with health-care professionals and family members may also calm some of the stress such reactions can cause.

People who have a history of clinical depression or bipolar disorder (in which there are swings from depression to excitement and back) should discuss this with their physicians even if the disorders appear to be under control. The symptoms of these disorders can be exaggerated by MS or its treatment and it may be necessary to avoid or modify some MS medications.

 
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