Life with MS: She’s pursuing new dreams
Michelle Stone was newly married and fulfilling her dream of a career in the U.S. Coast Guard when she sensed a “tingling” she’d never had before.
“I was feeling numb from the lower back down, and I became really clumsy, tripping over sidewalks and things,” she said.
Doctors at her base in Virginia Beach thought Michelle had a pinched nerve or a potassium deficiency, but a coworker recently diagnosed with MS, short for multiple sclerosis, found her symptoms strikingly similar to his own.
“He told me I needed an MRI. I practically had to beg for one. When I finally had one, there were so many lesions, there was no question,” Stone said.
She was diagnosed with MS at just 23 years old. The auto-immune disorder attacks the central nervous system, damaging nerve cells in the brain and spinal cord. It affects each person differently, but common side effects include difficulty controlling muscles, walking, talking, seeing and reasoning. It is the number one cause of disability in adults ages 20 to 40 outside of trauma.
With her husband recently relocated to a Navy base in Jacksonville and her family living in her hometown in Arizona, Michelle felt alone and scared.
“I was devastated. I didn’t know what my husband was going to think. And I knew that my career was over. MS is a disqualifying condition in the coast guard.”
The stress only made her condition worse. Her vision became blurry, she had difficulty carrying on conversations and she felt exhausted all the time. She began to struggle with walking and could barely move one of her arms.
“She was on a spiral course to losing muscle function of all four limbs at a very early age,” said Scott Silliman, MD, a University of Florida College of Medicine – Jacksonville professor of neurology who specializes in MS.
A change of course
Fortunately, Silliman intervened in that course when Michelle moved to Jacksonville and came to the Comprehensive Multiple Sclerosis Center at the UF Health Neuroscience Institute – Jacksonville. The MS team immediately became a lifeline.
Michelle made daily phone calls to program coordinator Adam Chaifetz, DC, MSCS, asking questions and discussing new symptoms she experienced.
“I would have been lost without him,” she said.
Chaifetz is a guide for all of the center’s almost 1,000 MS patients. He answers questions, supplies information, tracks down test results and connects patients with the various specialists they may need. He also leads a support group of about 60 patients who regularly meet for hospital-sponsored lunch-and-learns, featuring speakers who offer insight into managing the condition.
He also works with patients who have “low health literacy,” meaning they are not well-informed about their conditions and options or they don’t know how to interpret medical information like MRI results. Chaifetz makes sure they have a clear understanding because each patient is viewed as a part of the team that decides what the best course of treatment for that person is.
“Like a different person”
Before coming to UF Health Jacksonville, Michelle said she felt like she was “going in circles” with her previous doctors and treatment plans. She finished her first year of MS treatment using a medication called Rebif, which works for some patients, but was not strong enough for her rapidly advancing condition.
“I had relapse after relapse. When I had another MRI, I had even more lesions,” she said.
She sat down with Silliman for a long discussion about options. Together, they decided to switch to an aggressive medication called Tysabri. Silliman explained that few neurologists prescribe the new drug to their patients that “early in the course” because there are some serious risk factors associated with it. But he and Michelle agreed it was worth exploring, and he set her up for regular testing for negative side effects while she tried the drug.
Michelle started taking Tysabri through an IV once every 28 days. The results were better than either of she or Silliman could have predicted.
“Everything changed. I have no relapses, no new symptoms,” Michelle said. “I’m basically a different person.”
Also attending physical therapy, Michelle said her balance has vastly improved. She walks more easily now, has full use of her arms and doesn’t have the fuzzy mind MS once caused her to have. She exercises. And she’s pursuing new dreams: She earned her associate’s degree and is now pursuing a bachelor’s degree in Human Resources Management.
Her husband has been a strong support, and so have new friends she found at MS support group meetings at UF Health and in Orange Park.
“At first, I was scared to go because of what I was going to see, what could eventually happen to me. But they have been like my family away from home. There’s always someone to talk to and relate to, to get advice from if I need it.”
The impact of attitude.
Silliman said Michelle’s attitude has helped her just as much as her treatment plan.
“We’re only a part of the equation. The other part has to come from the patients, and Michelle definitely does her part,” he said. “She keeps a positive attitude and has an eagerness to get better. She’s compliant with her visits, takes her medicine and exercises.”
He said MS shouldn’t define who a person is, but rather be only a “tiny part” of who they are, and Michelle understands that.
“Just because you have this disease doesn’t mean your life is over and you can’t do anything else,” Michelle said. “You just have to adapt and overcome the obstacles.”
UF Health’s unique approach to MS.
Silliman said UF’s MS program is unique in the area because of its multidisciplinary approach. In addition to seeing a neurologist who specializes in MS, patients can work with several specialists in one visit, such as a physical therapist and a neuropsychologist, each of whom have a background working with MS patients.
“We use an inter-professional team approach, which is not often used by community neurologists,” Silliman said.
His team also works with low-income patients. If they can’t afford medication, they help them review options for clinical trials, in which they can take medication free of charge by participating in research.
Michelle said she wouldn’t hesitate to recommend Silliman to other patients.
“I feel like I’ve experienced at least most of the MS symptoms, and Dr. Silliman pointed me to all the right resources. I don’t think I could have found them without him.”
Silliman said the future is bright for MS patients.
“I think MS is one of the most exciting fields in all of neurology. There is a lot of hope for patients as we continue to make advances in drugs and therapies.”