Florida Mother Balances the Demands of Myasthenia Gravis

By Dennis Thompson
HealthDay Reporter

(HealthDay News) -- Marie Ronnlof learned she had the debilitating muscle disease myasthenia gravis in 1993, following a routine eye exam.

The doctor "couldn't find lenses that would correct my vision," said Ronnlof, 53, of Seminole, Fla. "He would flip between lenses, back and forth, and in a matter of seconds, my eyes would change."

Looking back, Ronnlof now knows that she'd been dealing with ocular myasthenia for some time, mostly with double vision. "I would always have one eye closed watching TV in the evening, to make it out," she said.

Ronnlof also tripped very easily, losing her balance with the most modest stumble and too weak to catch herself. She also had trouble breaking into a smile.

"My entire life, people have said, 'Smile once in a while!' It takes more of an effort to smile, so you tend to keep a straight face," she said.

She also was exhausted most of the time. But she had two kids and her work, and her doctors figured she was run down from overexertion. "They'd say, 'Look at what you're doing!' " Ronnlof recalled.

The eye doctor referred her to a neuroophthalmologist, who referred her to a neurologist, but the specialists still had trouble coming up with a diagnosis.

Then Ronnlof, who was pregnant at the time, lost her baby, and her symptoms skyrocketed. She quickly had trouble breathing and couldn't swallow, and her speech was slurred.

"I went from being so busy to not being able to leave the house without a wheelchair," she said.

After the symptoms flared, the doctors diagnosed myasthenia gravis. The disease kept getting worse, but Ronnlof said the diagnosis elated her.

"I had not a clue what myasthenia was, but it validated the last few years of my life," she said. "There was a reason. It wasn't me. I wasn't lazy."

Her doctors recommended a thymectomy, removal of the thymus gland, which was conducted in March 1994. Her symptoms persisted for a few more years then vanished.

"I'm still not 100 percent, but I'm 100 percent better than I was on my worst days back then," said Ronnlof, who also takes immunosuppressant drugs to help control the disease.

Now, it's mainly been a matter of learning to cope with her decreased energy levels.

"I don't clean my house in one day. I clean parts of it each day," she said. "I don't make a bunch of appointments in one day, or I wouldn't be able to do it all."

Ronnlof has also gotten used to the fluctuating symptoms of myasthenia. "Some days, my neck is weak. Other days, my eyes are bad. It changes day by day," she said.

But when she considers how the disease has hit others, Ronnlof feels lucky.

"You look at people with myasthenia gravis who haven't found a little bit of relief, and I feel great, and it puts it in perspective," she said.

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