The National Multiple Sclerosis Society defines MS as a chronic, immune-mediated disease where the body's immune system attacks the central nervous system, interrupting the flow of information between the brain and body. MS affects everyone differently. Carrie Cobler – a project manager, aspiring guitarist and animal lover – was 22 when she was diagnosed in 2011. Matthew Porter – an entrepreneur, ultramarathoner, husband and father of three – was 37 when he was diagnosed in 2014. Even though they have unique stories, they both share a passion for life.
WHAT IS MS?
Multiple sclerosis is an immune-mediated disease in which the immune system attacks the coating of nerves called "myelin" in the brain and spinal cord. This leads to attacks or relapses of neurological symptoms, such as vision loss, double vision, numbness, weakness, imbalance and fatigue. Treatments can reduce these attacks and prevent long-term disability.
Typical symptoms of MS include blurred or double vision, numbness, tingling, balance problems, weakness and impaired coordination. "For most people, the symptoms of MS appear without warning," said Dr. Barbara Green, a neurologist and MS specialist at Missouri Baptist Medical Center's MS Center for Innovations in Care.
Carrie could relate when she remembered her symptoms that appeared in December 2011 while she was in college at Mizzou. "I woke up one morning and I felt tingling and numbness throughout one half of my body," she described. When Carrie came home for holiday break, her primary care physician ordered an MRI.
Matthew discovered he had MS in a roundabout way. "In 2014, I had two episodes when I couldn't turn my head left or right," Matthew recalled. Courtney, Matthew's wife and adult nurse practitioner, ordered an MRI to see if there were any soft tissue abnormalities. "I wasn't having typical symptoms of MS, so that possibility never entered my mind," he said.
Because Courtney's office ordered the MRI, they saw the results, and she gave Matthew the news that he would likely be diagnosed with MS. "Even though it was hard for Courtney to tell me, we had time to process the possible diagnosis before seeing a neurologist," Matthew said.
The Porters made an appointment with Dr. Mark Tullman, MoBap neurologist and director of clinical trials at The MS Center for Innovations in Care, who confirmed that Matthew had relapsing-remitting MS.
Before they saw Dr. Tullman, the Porters prepared questions in advance of their appointment. "One of our first questions wasn't about medicine or the game plan," Matthew laughed. "Courtney asked if I had to stop running long distances." Dr. Tullman encouraged Matthew to continue to run as far and for as many miles as he wanted to go.
"When I was first diagnosed, I researched everything I could about MS," Matthew said. "What I found painted a picture of a life with canes, wheelchairs and pain." Matthew refused to let the images stop him from living life. "Every second is a gift to make the world a better place," he said. "I believe this is achievable by going after goals and helping others do the same. My MS is simply part of my journey."
Carrie received the news of her diagnosis from her doctor, Dr. Barry Singer, MoBap neurologist and director of The MS Center for Innovations in Care. He told her that she had relapsing-remitting MS.
Carrie was shocked at the diagnosis. "When I saw my father fighting back tears after he heard MS, I knew it was serious," she said.
The phone calls Carrie made to her mother and brother weren't easy. "Their tears at the announcement of my news reinforced my fears," Carrie remembered. "With a million thoughts running through my head, I curled up in bed under my covers and cried the entire afternoon. It was a hard day," she remembered. "I didn't know what to expect. I knew MS was something I was going to have to live with for the rest of my life."
There are different options for managing MS. "We look at each patient's prognosis, their symptoms, the medication options and possible lifestyle changes they can make," said Dr. Singer. "We provide MS-certified nursing support, physical and occupational therapy and ongoing neurological care for our patients, depending on their needs."
"Dietary changes, not smoking, exercising and reducing stress may help prevent MS from getting worse or improve MS symptoms" Dr. Tullman added.
"After I got the diagnosis, I was scared," Carrie shared. Dr. Singer put Carrie at ease. "He talked to me about what MS was, different treatment options and symptoms I could experience. An in-home nurse visited every few weeks to help me cope during the initial months."
Dr. Singer also recommended Carrie engage in physical activity. "I've always exercised, and now I work out to keep motivated," Carrie said. "I also eat nutritiously and take care of myself."
Like Carrie, Matthew is active and runs daily in preparation for a marathon this summer.
Many patients with MS experience depression. After Carrie was diagnosed, she had emotional ups and downs. She took steps to reduce her mental and emotional stress. "With the help of my life coach, I've worked on training my brain to recognize negative emotions and refocus them to be more positive," she said.
At the advice of Dr. Tullman, Matthew has taken steps to protect his mental health to stay positive and on course. "I found that running, yoga, meditation and breathing exercises help me manage stress and keep me moving forward," he said.
The monitoring of MS relies heavily on regular visits with a neurologist and MRI. "Routine brain MRIs are extremely important in most people with relapsing-remitting MS because new MRI disease activity is more common than new symptoms and may indicate an inadequate treatment response and the need for a different therapy," Dr. Tullman said. "We are fortunate to have highly skilled neuroradiologists and state-of-the-art magnetic resonance imaging that provides superior visualization of the brain and spinal cord."
So far, when Matthew has repeated his MRIs, the results have not shown any changes.
Like Matthew, Carrie also gets MRIs to track changes in her MS. This past year, Dr. Singer told her that there were two new lesions on her brain. "It was hard hearing the news," Carrie said. "I feel that my MS is already progressing, and I'm only 28 years old."
After seeing the results, Dr. Singer changed Carrie's medication from oral to intravenous. "I go to MoBap's infusion center every 28 days and have medicine infused into my body through an IV," she said.
"There have been major advances in MS therapy over the past several years that have changed the course of MS," Dr. Singer said. "Because we are better able to control the disease, improvements in patients have been dramatic."
Coping with MS Flare-Ups
Melanie explained that because MS is unpredictable, and affects each patient differently, the frequency of flare-ups varies.
"Symptoms almost always improve after flare-ups, but they often don't resolve completely" Dr. Tullman added. "That's why it's important to try to prevent flare-ups with medication."
"I haven't had any major flare-ups," Carrie said. "I experience some tingling in my fingertips, and more recently some weakness in my arms. Fatigue is the hardest symptom I have to cope with."
Matthew also experiences fatigue and describes a flare-up that happened unexpectedly during his workday when he lost the use of his hands for two and one-half days. "I readjusted my schedule, so my face-to-face meetings took place right away, and my written correspondence was moved later in the week," Matthew recalled. "Nobody noticed I had a problem."
Matthew looks to his best friend, Pete, who has cystic fibrosis, as a role model. "Pete doesn't complain," Matthew said. "I've watched how he lives his life and look at each day as a gift."
Top Care at MoBap
THE MS CENTER FOR INNOVATIONS IN CARE
For more information about Drs. Barry Singer, Mark Tullman and Barbara Green, and nurse practitioner Melanie Huff and The MS Center for Innovations in Care, visit MSLivingWell.org
Join us this Fall for an MS Symposium at MoBap with Drs. Singer, Tullman and Green, all BJC Medical Group neurologists who specialize in MS at MoBap, as well as nurse practitioner Huff. Follow our Facebook page to learn the date and details when announced.
MoBap's The MS Center for Innovations in Care focuses on an individualized, wholistic approach in its care for patients. "We listen to our patients and provide comprehensive, individualized care constructed around their symptoms and goals," said Dr. Green. "Because MS is a lifelong disease, we believe in the importance of building strong, long-lasting relationships with our patients. We want patients to know that they have a team of professionals partnering with them in their healthcare making decisions and supporting them and their families with the latest treatments, education and a wide range of services. We want to help patients live well with MS."
Dr. Singer and the MS Center team have been instrumental in making sure Carrie understands the ins and outs of MS. "Dr. Singer always takes his time with me during my appointments," she said. "He answers all of my questions and truly cares about my overall wellbeing."
Like Carrie, Matthew appreciates the time that Dr. Tullman takes to answer questions and his way of interacting. "Dr. Tullman walks into the exam room, sits and focuses his attention on me," Matthew said. "You can tell that he cares about me and what I'm going through."
Living Life with MS
Matthew and Courtney kept his MS diagnosis to themselves for one-and-a-half years to protect their family and children. They wanted to have answers to the questions they knew their children would ask. They also wanted all their children to be old enough to understand. "Time gave us breathing room," Matthew explained.
Carrie has learned to take one day at a time and appreciates everything she has. "I stay positive, and I'm intentional about it," she said.
But it's not always easy. "When I feel tired and weak, I can become frustrated and angry that I have to deal with MS," Carrie explained. "When this happens, I immediately start counting the things I'm grateful for. Before I know it, I've got a smile on my face and my focus is no longer on the things I can't control, but rather on things that I can."
Like Carrie, Matthew admits that he experiences easy days and days that are harder. "I don't want to live with MS, but that doesn't mean happiness can't come from it," Matthew said. "It begins with acknowledging and accepting that my reality is different from what I planned. And that's okay."
"Having MS has been a catalyst for change in my life," Matthew continued. "Now I am more aware of my time and making sure that it's invested in the people and goals that matter."
"I breathe and relax, knowing that I'm not alone on this journey," Carrie said. "I accept the support of friends and family, eat healthy and stay as physically active as I can. And above all else, I stay positive and choose to be happy."
"I've always been a person who's cared more about the present than the future or the past," Matthew continued. "We have a family mission statement that I live by and that guides my life: We have a debt to those before us and an obligation to those that come after us. We maximize life and potential through heart, intelligence and grit. We focus on our [family] bond. We do all of this because we are always stronger together."