NORTH OLMSTED, Ohio — It was Christmas, 2007. Toby Larson was living in Las Vegas and about to serve dessert to her guests. Suddenly she couldn't control her hands.
"My hands got stuck around the bowls and I couldn't get released," Toby remembers.
Her muscles clenched so tight, they appeared frozen. She was rushed to the hospital which began a journey of one misdiagnosis after another.
"It took 44 doctors and five years until I was finally diagnosed in 2012," Toby said.
The diagnosis was something she'd never heard of before. Stiff-person syndrome, or SPS. A rare disease that attacks the nervous system and causes rigidity and painful muscle spasms that can have enough force to break bones.
"My spasms usually start in my torso and then got to my legs, thighs, fingers and toes. My toes would go straight up in the air and I can't bring them down, I can't walk, my feet sometimes won't move and I've taken off the tops of my toes and toenails off and even faceplanted and chipped a couple of teeth. I wouldn't wish this disease on anyone, not even my worst enemy," Toby said.
While the diagnosis finally took away her questions, it also took her independence. She could no longer work or drive and had to move in with her sister who could care for her.
Her spasms are often triggered by noise and there's rarely a warning.
"You just never know where it's going to be, when it's going to be and how long it's going to be," Toby said.
When she learned that singer Celine Dion suffered the same fate, it broke her heart but also brought her hope.
"Maybe with her celebrity, she'll have a platform to get the word out there, raise awareness that they need to do a lot more research," Toby said.
Since Toby could no longer work, she needed disability.
"Social Security has Stiff Person Syndrome on their Compassionate Allowance Act and I got my disability in three months, which is usually unheard of. However insurance from Medicare doesn't kick in for two years, so one usually has to get State Medicaid or if financially sound pay for private insurance until Medicare takes over," Toby said.
Meanwhile, Toby found care at Cleveland Clinic. Every other week she recieves immunoglobulin infusions to help boost her immune system. She's also treated with diazapam to help control the spasms.
"My infusions used to cost upwards to $60,000 per infusion, but with a different manufacturer of immune globulin and home care now, just under $10,000 of which my insurance now pays. I am very fortunate for that," she said.
But now she hopes Celine Dion's battle will shed more light on an orphan disease that most people never even knew existed.