Support group forms for rare disorder MG
HARLINGEN — Karen Mau didn’t know what she had.
She knew some strange symptoms had beset her, including muscle weakness, a drooping eyelid, double vision and slurred speech.
She came up with all sorts of explanations for the symptoms, but none proved true.
Drooping eyelid? Eye surgery. Same for the double vision. And muscle weakness? Simple. She was in her 70s so of course she wasn’t as strong.
Finally the Harlingen resident found a neurologist who diagnosed her with myasthenia gravis.
“It’s an autoimmune disorder,” said Mau, 77. “It’s when your own body attacks itself because there is something there it doesn’t like. Nobody knows what causes it.”
It’s a rare condition and Mau said most sufferers feel alone in their suffering. That’s why she’s starting the new MG RGV Support Group.
“We’re very excited to get this support group going,” she said, adding she knows there are at least 20 people in the Valley with the condition.
There are probably more.
The new support group will offer sufferers a place where they can connect with others with the condition.
“The public is not aware of the symptoms,” she said. “I probably had this for years thinking back and just ignored it as ‘one of those things.’ That’s what most people who have myasthenia have done.”
She said even most doctors are not familiar with MG. Her first neurologist misdiagnosed her with dire consequence, but Alamo Support Group in San Antonio found two physicians treating MG. They put her in touch with one of them.
“She has been fantastic,” she said. “Most of the time I live a fairly normal life for my age.”
Nevertheless, there are still complications.
“It’s very discouraging, and the medication they give you has such horrible side effects,” she said. “You really get to the point, ‘I don’t know what to do. I’m here all by myself. Nobody understands.’”
The support group can finally offer those with MG that understanding.