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Johns Hopkins Hospital
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Harvard Medical School
MOG Project
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Julia Lefelar
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Michael Levy
2017.“It
Julie
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Lefelar drove
Gaithersburg
Md.
MS
Baltimore
Boston
the United States
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Somebody’s got to help me.”“I’ve never seen anyone move so fast,” she said of the staff’s response.For more than a decade Lefelar, who lives in Gaithersburg, Md., had battled puzzling episodes that lasted a month or two and typically included severe eye pain, darkening vision, shortness of breath, nausea and crushing fatigue. “Weird feelings of happiness that I had found my smoking gun,” she said, were mixed with memories of the pain she had endured and the recurrent fear that she was dying — and no one knew why.Lefelar also felt “anger and sadness that I had missed things other people enjoy” and at the ways her unidentified illness had marked her daughters’ childhoods.“Emotionally,” she said, “I was just torn.”The first attack started in 2000 with a bad cold that didn’t go away. Lefelar said he also pointedly advised her to find a new primary care doctor.A few months later she saw a third internist for the first of two visits. Another internist (No. 4) sent her to an ear, nose and throat specialist who prescribed antibiotics for a sinus infection.Her desperate decision to make an emergency trip to the ophthalmologist’s office marked the first eye exam she’d had in years.“I had let that go because I was so focused on other things,” she said. Its goal is to raise awareness of and stimulate research into the little-known disease.“I talk to people every week who are still being told [by doctors] that there’s nothing wrong with them,” Lefelar said, noting the worrisome parallels to her own experience.While her illness could not have been diagnosed in 2000 — MOG had not been discovered — Lefelar said she hopes to use her hard-won expertise to help others.“I wish that I was future Julie who knew how to advocate for herself,” she said.Submit your solved medical mystery to sandra.boodman@washpost.com.
As said here by Sandra G. Boodman