A 36-year-old is now experiencing the same odd verbal and motor tics first reported in teenage girls who live in LeRoy, N.Y. NBC's Amy Robach reports.
By Amy Robach, Kevin Monahan and Christina Caron
LeROY, N.Y. -- The mystery illness now producing Tourette’s-like symptoms in a more than a dozen girls from upstate New York is also affecting a 36-year-old who is experiencing the same tics as the teens.
Nurse practitioner Marge Fitzsimmons, who has spent her whole life in LeRoy, N.Y., lives just a few miles from the school the teens attend.
“It started out with sudden head jerks in the middle of October,” Fitzsimmons told NBC News, the tics occasionally interfering with her ability to talk.
It got so bad she had to leave her job working with developmentally disabled patients until the tics subside.
“The motor tics wouldn't stop, and the vocal tics started, and I went to one of the bosses and said I have to go.”
She hasn't been back to work in two months. On a good day, Fitzsimmons said, the tics are sporadic. On a bad day, she cannot control them. Extensive testing – including a CAT scan and blood work – didn’t provide any answers, the same frustration experienced by the teens.
“When it first started I thought maybe I'm going crazy,” she said. “As an adult, I can't imagine these teenagers going through this and for anyone to think that they're faking it at all. Try living a day in their shoes.”
Some neurologists, including Fitzsimmons’ doctors, have suggested the illness could be “conversion disorder,” or mass hysteria – something Fitzsimmons has accepted “because that's what gets me out of the bed every day. That is my answer.”
According to Dr. Laszlo Mechtler, vice president of the Dent Neurological Institute in Buffalo, N.Y., the disorder “occurs in small groups, especially girls in schools in small towns.”
“What happens is that one individual – the so-called index case – may have a neurological disorder,” Dr. Mechtler told NBC in January. “And then all of a sudden several other ladies have similar symptoms.”
High school student Thera Sanchez, 17, and 14 others started experiencing the odd symptoms last fall, around the same time as Fitzsimmons: stammering, verbal outbursts and limb spasms.
“I want an answer,” Sanchez told NBC in January, her words periodically punctuated with jerking motions and involuntary grunts. “I’ve had psychological treatment. They say this is stress induced. My psychological treatment …. That’s all they do is stress me out more.”
The teens’ plight captured the attention of environmental activist Erin Brockovich, who began speaking out about a 1970 train accident that spilled cyanide and industrial solvent four miles from the teens’ school, LeRoy Junior-Senior High School. According to a 1999 Environmental Protection Agency report, approximately 35,000 gallons of TCE (trichloroethene) contaminated the area near the derailment.
The EPA has been doing "routine maintenance" on the train derailment site in LeRoy, but said in a statement it “appears unrelated to the illness.” And after investigating the case for months, the New York State Health Department concluded the school grounds are not to blame for the girls’ symptoms.
“We have conclusively ruled out any form of infection or communicable disease and there’s no evidence of any environmental factor,’’ Dr. Gregory Young of the New York Department of Health told NBC News in January.
Now Brockovich’s team is testing the area.
Fitzsimmons told NBC News that when she was a teenager, she used to hang out in the same area where the train had derailed. And now she wants to know if her own hometown – rather than “conversion disorder” – could be the root of her symptoms.
“This is really scary; it's like somebody came in and took home away. LeRoy has always been home for me,” Fitzsimmons said. “At least somebody is trying to get answers.”
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