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Living life to the fullest with relapsing-remitting multiple sclerosis (MS)

Author: ROBERT S./Friday, February 08, 2019

by Michelle Berger

MBMC | The National Multiple Sclerosis Society defines MS as a chronic, immune-mediated disease in which 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 manages her multiple sclerosis with help from The MS Center for Innovations in Care at Missouri Baptist Medical Center. | Photos by Chris Malacarne

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.

Unexplained symptoms

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,” says Barbara Green, MD, a neurologist and MS specialist at Missouri Baptist Medical Center’s MS Center for Innovations in Care.

Cobler could relate when she remembered her symptoms that appeared in December 2011 while she was in college at the University of Missouri Columbia. “I woke up one morning and I felt tingling and numbness throughout one half of my body,” she says. When she came home for holiday break, her primary care physician ordered an MRI.

Matthew Porter says having multiple sclerosis has been a catalyst for change in his life, and he and his family “maximize life and potential through heart, intelligence and grit.”

Porter didn’t experience typical symptoms of MS. In 2014, he had two episodes when he couldn’t turn his head left or right. An MRI was ordered to check for any soft tissue abnormalities.

Diagnosis

After the MRI revealed that he would likely be diagnosed with MS, Porter and his wife, Courtney, made an appointment with Mark Tullman, MD, MBMC neurologist and director of clinical trials at The MS Center for Innovations in Care, who confirmed that Porter had relapsing-remitting MS.

“I wasn’t having typical symptoms of MS, so that possibility never entered my mind,” Porter says.

The Porters prepared questions in advance of their appointment with Dr. Tullman. “One of our first questions wasn’t about medicine or the game plan,” Porter laughs. “Courtney asked if I had to stop running long distances.”

Dr. Tullman encouraged Porter 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,” Porter says. “What I found painted a picture of a life with canes, wheelchairs and pain.”

Porter refused to let the images stop him from living life. “Every second is a gift to make the world a better place,” he says. “I believe this is achievable by going after goals and helping others do the same. My MS is simply part of my journey.”

Cobler received the news of her diagnosis from her doctor, Barry Singer, MD, MBMC neurologist and director of The MS Center for Innovations in Care. He told her that she had relapsing-remitting MS.

Cobler was shocked at the diagnosis. “When I saw my father fighting back tears after he heard MS, I knew it was serious,” she says.

The phone calls Cobler made to her mother and brother weren’t easy. “Their tears at the announcement of my news reinforced my fears,” she remembers. “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 remembers. “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.”

MS management

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,” Dr. Singer says. “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 adds.

“After I got the diagnosis, I was scared,” Cobler says. Dr. Singer put her 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 Cobler engage in physical activity. “I’ve always exercised, and now I work out to keep motivated,” Cobler says. “I also eat nutritiously and take care of myself.”

Like Cobler, Porter is active and runs daily.

Many patients with MS experience depression. After Cobler 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 says.

At the advice of Dr. Tullman, Porter 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 says.

Monitoring MS

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-visible disease activity is more common than new symptoms and may indicate an inadequate treatment response and the need for a different therapy,” Dr. Tullman says. “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 Porter has repeated his MRIs, the results haven’t shown any changes.

Like Porter, Cobler 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,” Cobler says. “I feel that my MS is already progressing, and I’m only 28 years old.”

After seeing the results, Dr. Singer changed Cobler’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 says.

“There have been major advances in MS therapy over the past several years that have changed the course of MS,” Dr. Singer says. “Because we are better able to control the disease, improvements in patients have been dramatic.”

Coping with MS flare-ups

Melanie Huff, nurse practitioner at The MS Center for Innovations in Care, explains 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 adds. “That’s why it’s important to try to prevent flare-ups with medication.”

“I haven’t had any major flare-ups,” Cobler says. “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.”

Porter 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 a 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,” Porter recalls. “Nobody noticed I had a problem.”

Porter looks to his best friend, Pete, who has cystic fibrosis, as a role model. “Pete doesn’t complain,” Porter says. “I’ve watched how he lives his life and looks at each day as a gift.”

Living life with MS

Porter and his wife 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,” Porter explains.

Cobler has learned to take one day at a time and appreciates everything she has. “I stay positive, and I’m intentional about it,” she says.

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,” Cobler explains. “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 Cobler, Porter admits that he experiences easy days and days that are more difficult. “I don’t want to live with MS, but that doesn’t mean happiness can’t come from it,” Porter says. “It begins with acknowledging and accepting that my reality is different from what I planned. And that’s OK.

“Having MS has been a catalyst for change in my life,” he says. “Now I’m 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,” Cobler says. “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,” Porter continues. “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 who 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.”


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