When Life Gives You Multiple Sclerosis, You… Get on a Bike?

How one woman got her balance back.

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When Raquel M. went for a routine physical about three years ago, she was expecting to receive a clean bill of health. After all, the then-42-year-old single mother of three was working full time and constantly on the go: She didn't have time to be sick. But Raquel's doctor was concerned after performing two reflex tests on her knees.

"She said, 'I see something a little abnormal — I would like to send you in for an MRI,'" Raquel recalls. "She wanted to make sure it wasn't multiple sclerosis (MS), and I thought, 'Are you kidding me? I know I'm clumsy, but I don't have MS!' But I had insurance, so I rolled with it."

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When the test came back positive for MS — a potentially disabling disease that interrupts and distorts messages from the body's nerves to the brain — Raquel found herself in "a huge state of denial." To be on the safe side, she consulted a neurologist for a second opinion, and the doctor told Raquel the exact day she'd receive a call if the results were positive.

"My now-husband, Gilbert — who was my boyfriend — stayed with me all day," she remembers. "It was 8 at night and I said, 'Listen, you have to go to work tomorrow. Go home, no one is calling at this hour.' At 8:24 p.m. — and I will never forget the time — the phone rang and a doctor introduced himself. My heart raced and I went into a fog because I knew he was calling with bad news."

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Even though Raquel still cannot remember anything the physician said during the first 30 seconds of their conversation, she did hear the words: "You have MS." After that, all she could do was envision her aunt who'd been living with the condition for nearly 35 years.

"She's incapacitated to where she's in a wheelchair and no longer independent," Raquel says. "So I immediately thought, 'Okay, that's how I'm going to end up.' I was just devastated."

Getting Up After a Fall

Being afraid of falling is usually reserved for two extremes: really young people and really old people. A 40-something mother shouldn't be afraid of the ground. And yet, after the diagnosis, Raquel admits she "went into a shell" because her fear of falling consumed her, especially when she began to lose coordination and needed a cane. With her parents and boyfriend by her side, they slowly convinced her to get out and about, although she had to face a few upsetting experiences.

"One time I fell at the mall, so security showed up," she says. "The first time it happened, I cried and couldn't get out of there quick enough. But it was something I had to learn how to deal with."

Raquel's parents took over some of her regular duties, like driving her twin daughters, Scina and Celesia, to elementary school, along with cooking dinner for the girls and staying overnight on those extra-difficult days. "If it wouldn't have been for my mom and dad that first year, I think I would have lost my mind," Raquel says.

But she found hope in the medical team at the neurology center, who from the very start armed her with information about the disease of the central nervous system. She learned that at least two to three times more women are diagnosed with MS than men, with most cases occurring between the ages of 20 and 50, according to the National Multiple Sclerosis Society. It's thought that MS affects more than 2.3 million people around the globe.

Her neurologist also explained that she had relapsing-remitting MS (RRMS), the most common of the four types, which involves temporary flare-ups when new symptoms appear.

"My doctor said to me, 'It's going to get worse before it gets better, but we can control this. You are going to be fine and you are going to have a normal life,'" Raquel says. "She's a little stick of dynamite and a wonderful motivator."

The Trial Treatment

Raquel took part in a double-blind clinical trial that gave volunteers either an FDA-approved medication that was already on the market to treat MS or a new experimental treatment, ocrelizumab, which is currently being reviewed for patients with RRMS and primary progressive MS (PPMS).

"This is really exciting because we have absolutely no approval for FDA drugs for this particular type of MS [PPMS]," says Ann Bass, MD, neurologist and president of Neurology Center of San Antonio. Dr. Bass explains that because she met with Raquel shortly after her diagnosis, she was able to place her in the study immediately.

As the medical community awaits FDA approval for this investigational treatment, Raquel will be continuing on this new therapy — which involves a six-to-seven hour infusion every six months — for at least the next three years.

"I want MS patients to know that in this decade, this disease is very treatable," Bass says. "There is a wealth of treatments available, so it's very important that people get diagnosed early, get treated early, get treated effectively, and stay on treatment consistently. If they do those four things, they have a very good chance of doing very well over their lifetime. They have control of the disease — it doesn't have them!"

Moving Full-Speed Ahead

Two years after the diagnosis, Gilbert bought Raquel a bicycle for her birthday.

"'You are just twisted!' I told him, but he'd always say, 'If it doesn't kill you, it's going to make you stronger,'" she says. "Granted, that first time I fell twice — and I was ready to throw him and the bike over the bridge! But eventually, I kept riding, and I got my balance back."

Today, she's not only bike riding with her family, but also working full-time, gardening, driving her girls to school, coaching their soccer team, and looking forward to skiing on Mount Rainier with her sister next winter.

"I still wake up stiff in the morning, and it takes about 15 to 20 minutes for the muscles to loosen up," she admits. "So I shuffle over to the coffee maker — coffee is a great motivator — and I think of my children. They are my rock."

Raquel believes this disease affected her for a reason. "It definitely made me slow down to smell the roses," she says. "The way I accepted MS was thinking this was God's way of saying, 'You're going too fast, you're forgetting your kids, so if you can't slow down, I'll slow you down!' It humbled me to be a better mother — it humbled me beyond belief."

Her advice to others with this disease: Focus on your progress.

"Don't compare your MS to anyone else's MS — it's your own journey. Find something that is going to drive you every day. And get back on the bike!"

For more information about multiple sclerosis, visit www.nationalmssociety.org. And for information about clinical trials, visit the U.S. National Institutes of Health's registry and database at clinicaltrials.gov.

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