Zach Nielson at age 11 couldn’t quite put his finger on the two words his doctors were avoiding using around him. But his mother certainly could. Deb Nielson knew people in wheelchairs, knew what it meant that Zach was waking up numb, knew how scary it was when he staggered stiffly down the hallway like a young drunk.
But just over two years later, a new generation of powerful drugs has drained the power of the words “multiple sclerosis” for Zach and thousands of patients like him. The drugs have erased symptoms and reversed nerve scarring in the largest subgroup of MS sufferers, transforming for the first time victims’ experience with the disease.
Far from a life sentenced to relentless disability, Zach Nielson is among
a growing group who feel as if their MS never happened.
“When they first told me, I was worried it would get worse and worse, and I wouldn’t be able to have my dream job,” said Zach, who just turned 14. “Now I know I can be a pilot.”
The new class of drugs “gave me my active son back,” Deb Nielson said. “I’m convinced of that now.”
Eight hundred MS patients are on Zach’s miracle drug, Tysabri, through the Rocky Mountain MS Center and the University of Colorado Denver’s Anschutz Medical Campus. Hundreds more are on Gilenya, the first approved oral treatment for MS, and other new drugs introduced in recent years.
Dr. Tim Vollmer, an Anschutz MS expert, calls it a “rich tool set of many drugs” and said it’s “not unusual for those patients to come in and say, ‘I don’t feel like I have MS anymore.’ “
“People with MS have a reason to be optimistic,” said Dr. Timothy Coetzee, chief researcher at the National Multiple Sclerosis Society in New York.
Elissa Berlinger, 25, now feels the kind of hope as she leaves Colorado for graduate school that she only recently thought might be impossible.
The MS education for Berlinger began five years ago, when she was 20 and energetic and about to leave on a dream student-travel trip to Europe. She got strep throat and mono just before she left, then felt weakness in her hips. While traveling, she collapsed on the way to a hotel bathroom.
Her descent into the mystery of the disease followed classic lines: flare-ups every few months, numbness from hip to toe, amateur diagnosis of a slipped disc or lingering mono. X-rays for a tumor were negative, and the next step was an MRI.
“I always said the unknown is scarier than anything else,” Berlinger said.
Before she got the MRI results, a colleague with MS tried to prepare her for bad news with supportive advice. Berlinger turned 24, got an MS diagnosis the next day and promptly returned to Europe and the land of denial.
Eventually,
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