In 2016, 35-year-old Jill Koziol was busy running Motherly, the company she co-founded to help mothers thrive, while also mothering her own two children. Then a multiple sclerosis (MS) diagnosis stopped her in her tracks.
At first she was overwhelmed with information, but Koziol quickly learned to be her own advocate. She read up on MS and worked closely with a team of healthcare providers to figure out the best treatment plan for her.
“When reviewing options with my doctor, I was well-researched and had spoken to a few other doctors in my network, asking all the questions and exploring my options from every angle,” Koziol said.
After careful consideration, Koziol and her healthcare team decided to pursue an aggressive course of treatment that has kept her MS under control for nearly seven years. Now 42, Koziol feels healthier than she did at 22.
“MS is very individualized and so are the treatment plans,” Koziol said. She’s a great example of how sharing in the decision-making process helps empower people with MS to choose the treatment that’s best for them.
MS is a disease that affects the central nervous system, which is made up of the brain, spinal cord and optic nerves. Although scientists aren’t sure what causes MS, they know something triggers the immune system to attack the central nervous system, damaging the protective layer around nerves (called myelin) and preventing signals from passing to and from the brain.
MS affects everyone differently, causing a wide range of symptoms that can range from mild to debilitating. For this reason, the disease is treated in a lot of different ways. During MS attacks when symptoms are flaring, medications such as steroids may be used to lessen nerve inflammation.
There are a number of treatments designed to slow the progression of MS and keep it from getting worse, which can be especially helpful during the early stages of the disease. Some medications can be taken orally, while others are given as an injection or intravenous (IV) infusion.
Other options for managing MS symptoms may include physical therapy to help with walking issues and medications to reduce weakness and fatigue.
The MS treatment path you and your healthcare providers (HCPs) choose will likely depend on a lot of factors, including not just your symptoms but also your lifestyle and personal preferences. These preferences — along with your values, priorities and goals about care — should help determine next steps for treatment.
“It’s not about ‘What is the best medication we have?’ but rather what is the best medication for that particular patient,” said Flavia Nelson, M.D., director of the Multiple Sclerosis Center of Excellence at the University of Miami.
Because you’re the ultimate expert when it comes to your body, you should have a say in how your MS is managed. Building a relationship based on mutual respect with your care team will help ensure that you play an active role in decisions about your treatment.
Koziol believes it’s critical for people with MS to be involved in decision-making about treatment. “We must be our own advocates every step of the way,” she said. “That starts with doing our own research and homework so we can ask educated questions of our healthcare providers and ensure we find providers we feel respect us.”
Of course, it isn’t easy to be an advocate, and dealing with a diagnosis can be overwhelming. So if you need assistance, organizations like the National Multiple Sclerosis Society can help with finding resources, including important questions to ask your HCP at your next appointment.
“Respect can be expressed in many forms, including giving patients enough time to express their concerns and ask questions,” Nelson said. “In my experience, this makes a significant difference when it comes to improving their understanding of their disease and treatment — and therefore their well-being.”
Nelson likes to give her patients a couple weeks to go over the details of their treatment options after she presents them, then schedule a follow-up appointment. “This allows a more informed decision and more realistic expectations,” she said. Nelson noted that the number of MS medications has increased significantly in the past 10 years, so giving patients ample time to go over their options helps them understand side effects and expected outcomes.
Having a say in your MS treatment may help the treatment work better. Research shows that MS patients who share in decisions about their treatment plans are better able to stick to the plan — which leads to better results when it comes to managing their disease.
“When a patient helps determine their care, compliance and trust in the system will be better, which will translate into better outcomes,” Nelson said.
Start by writing everything down before your appointment. This may include lists of your supplements and medications, any new medications you may be taking, current symptoms, and any lifestyle changes (increased stress, for example). Be sure to bring copies of information from other medical appointments to share with your HCP.
What does Nelson suggest patients who want to take an active role in their MS treatment bring to their appointments? “All of their questions.”
Before you can share your treatment preferences with a provider, you need to find one who will hear you. “Unfortunately, women’s health concerns are often waved off in today’s medical culture so it’s essential as women that we understand and use the power of our voices,” Koziol said.
“If your doctor isn’t listening — if you don’t feel heard — find another doctor. Listen to your instincts. You know your body better than anyone and you deserve a provider who will take your concerns seriously,” Koziol said.
If finding another doctor or changing doctors isn’t possible, outside resources such as the Multiple Sclerosis Association of America and the Multiple Sclerosis Foundation provide educational programs, healthcare assistance and other helpful options for people with MS.
An MS diagnosis can be scary, but participating in your own care can help you get a handle on the disease so you can keep living your life. “Leading with strength and empowerment, trusting yourself and your body, can be the key to successfully putting MS in its place,” Koziol said.
This resource was created with support from Viatris.