Living with MS, walking for MS
Team Danielle to walk 5K to raise awareness and money for research
Danielle Wilhite wasn't overly concerned when her hands suddenly went numb. After all, she was a healthy 18-year-old, in her senior year at Foothill High, and had just played in the powder puff football game.
"It was a feeling like when your foot falls asleep," recalled Wilhite, now 24.
When the numbness and tingling continued however, for two weeks, she went to her doctor, who sent her to a neurologist.
"He said maybe it was a pinched nerve," Wilhite said.
For the next few years, as she continued her education at Cal State East Bay to graduate in 2009, she sometimes experienced tingling in her feet and also in her spine. Each time she sought medical help but with no diagnosis -- until she was 23.
"I woke up one morning feeling really dizzy. Every time I moved I would vomit," she said. "I had complete vertigo. I went to the doctor, who thought it was food poisoning, but I knew it was more than that.
"The doctor ran a CT scan of my brain and my stomach, and said it showed nothing, that it must be a bad flu," she continued. "They gave me an IV and sent me home."
The next morning a nurse called to say she'd also looked at the CT scan, that it showed "something weird," and she'd made Wilhite an appointment with a neurologist.
"I went to the appointment and he said, 'I think it's an infection of your inner ear, which is throwing off your balance but there are some spots on your CT scan; I want you to get another MRI," Wilhite remembered.
He found three scars on her brain and three on her spine. They lined up with when she'd experienced the symptoms.
Wilhite recalled telling him, "You are the fifth doctor I've seen. Are you going to be able to tell me what's wrong?
"He looked right at me and he said, 'You have multiple sclerosis.'"
He stressed the importance of getting on medication immediately to stop the disease's progress and sent her home with the names of several drugs.
"He said, 'You need to research what works best for you, for your schedule. There are different side effects with every drug -- you need to decide which you can live with," she said.
He also cautioned her only to read websites that ended with .org, explaining the .com websites might contain misinformation. She chose Rebif and has been on the medication ever since.
"I truly believe you have to be your own advocate," Wilhite said. "Once I started doing my research, I found out that it's mostly diagnosed from ages 20 to 50, and women are twice as likely to get it as men."
Nurses came to the house to teach her and her support team, including family members and her boyfriend, how to give the shots. They eased her onto a full dosage, then adjusted it for her weight. During this period, she had to take a leave of absence from her job in sales.
"All the drugs did have symptoms like flu, you get achy, feverish," she said. "Before every shot I take Tylenol or aspirin. I take shots Sundays, Tuesdays and Thursdays, so Monday, Wednesday and Friday are my most challenging days and I have to take a nap. Tiredness is only thing that affects me a lot."
With MS, she explained, the body's own defense system attacks myelin, the fatty tissue that surrounds the nerve fibers in the central nervous system.
"When it attacks, your body thinks it's like a cold or the flu, and it forms a lesion or scar," she said.
MS is chronic and often disabling, with symptoms that can be mild, such as the numbness, or that can be severe, such as paralysis or loss of vision. Wilhite said she has "relapsing, remitting" MS, which means that any symptom she has will eventually go away.
"Every time I have a symptom they do another MRI; that's how we check the progression," she said. "So far so good."
She walks 30 minutes a day at least five days a week, following her doctor's advice to "move, move, move."
"I've always taken pretty good care of myself," she said. "Now I'm more conscientious about it. I work out a little more, I eat a little better."
"My friends and family had a hard time in the beginning with my diagnosis," she added, but they have all become matter of fact now in helping with her medication and keeping her comfortable.
She knows it was awkward for people when they saw her for the first time after hearing about her MS.
"When I was first diagnosed everyone wanted to say something refreshing," she recalled. "My least favorite is when someone says, 'It could be worse.'"
She likes when people simply remark, "You look like you're doing well."
To raise money for research and awareness, Wilhite and her supporters have formed Team Danielle and are walking in the 5K MS Walk tomorrow in San Francisco for the second year. Last year, 18 were on the team; this year it's grown to 33. They've been holding fundraisers around town, including a pizza night, a jewelry party and her hair stylist donating 10% if a patron mentions Team Danielle.
There is no minimum amount needed to walk -- the team just raises as much as it can to give the foundation, she noted, and 80% of the money goes to MS research.
Having MS has changed her outlook on life, she said. "I feel like I don't sweat the small stuff quite as much."