National MS Society Courtesy Michael WeissNearly one million people are living with multiple sclerosis in the United States, according to a new study funded by the National Multiple Sclerosis Society (NMSS). That’s twice as many people as experts estimated. One reason for the enormous discrepancy is that, until recently, MS was greatly misunderstood; patients would go misdiagnosed for years. Unfortunately for Michael Weiss, he falls into this category: The 50-year-old husband, father, business development professional, and self-professed “live music addict” was diagnosed with MS in 2004. But he had been battling symptoms for more than a decade before that.
Weiss tells Reader’s Digest there were times in his 20s when he experienced vertigo—a severe loss of balance—especially when walking down the stairs or simply looking down at his feet. At the time, he blamed it on staying up too late the night before or being dehydrated. He would also experience numbness or tingling in his fingers and toes, but he never linked these symptoms to his vertigo. His symptoms were just two of the 11 silent signs of multiple sclerosis.
Ted Partin/Courtesy Michael Weiss“I went to docs a couple of times, but as soon as I told them I was playing a lot of basketball and had played football growing up, they’d blame the sports and send me to physical therapy,” Weiss recalls. Then new symptoms began cropping up, including severe fatigue, difficulty focusing, and more bizarre nerve issues. “There were days when the entire left side of my body was numb, and even after 10 hours of sleep, I could barely drag myself out of bed to get to work.”
In 2004, he went to another doctor who suggested the symptoms were in Weiss’s head and prescribed massage therapy. Not long after this visit, Weiss’s vertigo got so bad he had trouble staying upright in the shower. Determined to get to the bottom of his troubles, he went to an orthopedist who ordered an MRI and referred Weiss to a neurologist; at long last, the specialist spotted the lesions that led to his MS diagnosis. Weiss would not be the first person to experiencing such a circuitous route to a diagnosis—it’s very similar to the way actress Teri Garr’s struggled to get her MS diagnosis.
Sheryl Kennedy/Courtesy Michael WeissBecause Weiss was worried he had a brain tumor or ALS, he initially felt a sense of relief. “Now that I knew what I was dealing with, I could begin to move forward.” For the next 13 years, Weiss took daily injections of a drug called Copaxone; it can reduce the frequency and severity of MS symptoms. At the time, it was one of only four FDA-approved treatments available, but since then research has turned up more than a dozen treatments. Weiss now takes a recently approved medication called Ocrevus, which slows MS progression through twice-a-year infusions.
“As patients, we owe it to ourselves to be proactive, take ownership of our disease, and do something every single day to put ourselves in a position to be successful,” Weiss says. He’s embraced a role in the search for an MS cure: A band he co-manages, God Street Wine, is actively involved in raising money for NMSS. Weiss is also a four-time Master of Ceremonies at the NMSS’s National Leadership Conference. He’s served on the Board of Trustees and the Development Committee for the NJ Metro Chapter of NMSS, and he’s a member and co-leader of the group’s fundraising team. Over the years, he’s raised more than $300,000 for MS research and education, in part through the efforts of Team Weiss, which takes part in the annual WalkMS charity event.
One of the most common MS symptoms is simply your age. While Weiss was symptomatic for years, multiple sclerosis is usually diagnosed in young adulthood, during your 20s or 30s. TV personality Jack Osbourne was diagnosed with MS at age 26, and that’s quite common. Read how he’s learning to live with MS.