Stiff Person Syndrome Locks Up One Woman's Body

Following the disastrous episode after the wedding, Tunick was sent to UCLA, where neurologists gave her a possible diagnosis of SPS. But they were not able to do a complete work-up of her condition because she was five weeks pregnant.

"That shocked all of us," Tunick said. "I wasn't supposed to be able to get pregnant [because of medications], and I was in pre-menopause."

Tunick had an abortion. Then, for about five months between January and May 2008, she remained locked up, stiff and unable to move any of her limbs.

"I was a paraplegic, basically," Tunick said. "[Afterwards] I went to rehab and had to relearn how to do everything, like a baby."

Confusing Symptoms

Her physical inabilities have taken a frightening emotional toll on the couple.

"It scares Brian to think he's going to walk into the house and find me dead," Tunick said.

In addition, insurance companies have made diagnosing and attempting to treat Tunick's various conditions a frustrating daily problem. In the past, her insurance providers have refused to fly her by helicopter to specialized treatment centers, discharged her from intensive care units while her muscles were still tensed, and prevented her from undergoing smaller procedures such as multiple endoscopies.

Paying For Treatment Proves Difficult

Tunick and Mendenhall are struggling now to raise enough money -- they estimate that they need approximately $200,000 -- to go to the Mayo Clinic in Rochester, Minn., one of the premier centers for evaluating SPS. The couple is already burdened with costly hospital bills from the last few years of treatment.

Weiner said treating SPS is heavily dependent on the person, and there are no guaranteed therapies. The most common treatments include muscle relaxants such as diazepam or anti-epileptic drugs to control spasms, but some patients don't like them because they cause drowsiness.

"The whole thing can be quite debilitating," Weiner said. But he pointed out that there are some promising therapies for autoimmune diseases such as SPS that work by flushing the immune system with a new population of antibodies, in the hope that they will be less aggressive toward bodily tissues than their predecessors.

Meanwhile, those like Tunick who live with the condition wait for a medical solution.

"I haven't spent that much time doing anything in public due to my illness. Prior to this I was the most active person you've met," said Tunick, who maintained a full time college and work schedule in addition to participating in a sorority, and later cared for her chronically ill mother for about three years.

"I never know what my body is going to do," she said. "I couldn't be maid of honor at my best friend's wedding. I couldn't even attend the wedding."

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