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Help for Myasthenia Gravis Sufferers

November 15, 1985|SUE HORTON | Horton is a Los Angeles free-lance writer. and

Rosanne Dunn, 26, had her first child two years ago, and she found herself so weak that she "couldn't even hold my head up. It just rolled from side to side. My arms were so weak, I couldn't lift up my baby. It was so hard. I wanted desperately to hold him and I couldn't."

Dunn at first hoped that the problems were related to her difficult, 15-hour labor. She didn't mention her muscle weakness to her doctors because she was afraid they wouldn't allow her to keep her baby in her room.

But after Dunn was discharged from the hospital, it became clear that something was very wrong. Her strength had diminished even further, and she was extremely morose.

"My husband thought it was just post-partum depression, but my sister made me go to the doctor," Dunn said.

Dunn's doctor referred her to a neurologist who, after an examination and tests, made a diagnosis of myasthenia gravis, a rare chronic muscle disease in which nerve impulses are not properly transmitted to the muscles.

"At first it was really a relief knowing what was wrong. . . . Then I read about the disease and I was scared silly," she said.

Dunn's fears were not unfounded. While myasthenia gravis is seldom fatal, the autoimmune disease causes severe muscle weakness and fatigue.

At best, patients with myasthenia gravis must change their life styles, often drastically, to allow for greater periods of rest. For some people the disease is completely debilitating, and, if the muscles that control swallowing or breathing become involved, it can be life threatening.

In healthy people, nerves transmit impulses to muscles through the chemical acetylcholine at sites on the muscle called acetylcholine receptors. Myasthenia gravis patients have fewer of these sites at which the chemical can be transmitted, and therefore don't receive the nerves' communication well.

Researchers suspect that myasthenia patients' immune systems for some reason attack and destroy the acetylcholine receptors.

For Dunn, the first symtom appeared when she was 14 and started seeing double. In the years that followed, she consulted a lot of doctors about the problem. Some gave her glasses; some said the problem was in her mind.

Dunn had some other medical troubles during those years, but like her vision, the problems were all things no doctor ever quite diagnosed prior to the birth of her baby. She was often tired, and needed much more sleep than her friends. She missed a lot of school because she was unable to muster the strength to attend.

'So Embarrassing'

And there was the falling down. "I used to fall flat on my face," she said recently. "It would be so embarrassing. I'd be running, say, for physical education class, and all of a sudden, plop. I'd be flat on the ground."

None of her symptoms except the vision was easy to pinpoint. Some days she'd feel fine; on others she would have problems. "I used to diet a lot," she said. "I'd just attribute my occasional weakness to that."

As in Dunn's case, the first symptom of the disease is often weakness of the eye muscles. Sometimes vision becomes blurred; other times the eye droops. As other muscles become involved, patients sometimes have trouble walking or speaking. The symptoms often disappear completely for periods of time and then return.

"Myasthenia gravis is often misdiagnosed," said Dr. John Keesey, a Long Beach neurologist who chairs the medical advisory committee for the California chapter of the Myasthenia Gravis Foundation. "The symptoms are often intermittent, and many of the symptoms are more often associated with depression or other emotional problems."

Many myasthenia gravis patients complain they were treated for psychological ailments for long periods before anyone correctly diagnosed the disease as being physical instead of mental.

Burning Candle at Both Ends

Lois Grond was working nights as a nursing attendant at Rancho Los Amigos Hospital in Downey when she first started feeling strange. "It started with my leg. I would feel like my leg was so weak I couldn't lift it. I just had to drag it along," she said. Other times her entire body would become weak. "I felt just like a balloon deflating," she said.

For two years she continued working. She also saw numerous doctors, none of whom came up with a correct diagnosis. The consensus was that she was having a stress reaction from working too hard, she said.

"I was sort of burning the candle at both ends. I would work all night and then take care of my husband, who was very ill, all day. But I knew there was more to my problem. I knew I was sick."

Others didn't agree. "Although my family was very supportive, a lot of people I knew said I was just using my weakness as an excuse for getting out of things I didn't want to do."

By 1979, things had gotten so bad that Grond had to quit work and go on disability. Still there was no diagnosis.

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