Multiple Sclerosis Treatment & Decision Sharing

In 2016, Jill Koziol, 35 years old, busy running good mother, the company she co-founded to help moms thrive while raising two of their own. Then a multiple sclerosis (MS) The diagnosis prevented her from following.

At first, she was overwhelmed with the information, but Koziol quickly learned to Be her own advocate. She read about MS and worked closely with a team of health care providers to find the best treatment plan for her.

“In reviewing the options with my doctor, I did a thorough research and talked to several other doctors in my network, asked all the questions and explored the options,” says Koziol. My pick from every angle.

After careful consideration, Koziol and her healthcare team decided to pursue an active course of treatment to control her MS for nearly seven years. Now 42 years old, Koziol feels healthier than at 22 years old.

“MS is very individualized, and so are treatment plans,” says Koziol. She is a great example of how sharing in the decision-making process helps empower people with MS to choose the best treatment for them.

Choose the best MS treatment for the person

MS is a disease that affects the central nervous system, which is made up of the brain, spinal cord, and optic nerve. Although scientists aren’t sure what causes MS, they do know something triggers the immune system to attack the central nervous system, damaging the protective layer around nerves (called To be myelin) and block signals from traveling to and from the brain.

Watch our video, “How Multiple Sclerosis Affects the Central Nervous System” >>

MS affects everyone differently, causing a variety of symptoms that can range from mild to debilitating. For this reason, the disease is treated in different ways. During MS attacks when symptoms flare, medications such as steroids can be used to reduce nerve inflammation.

Have some treatments designed to slow the progression of MS and keep it from getting worse, which can be especially helpful in the early stages of the disease. Some medications can be taken by mouth, 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 problems and medication to reduce weakness and fatigue.

Personal preference should be considered

The MS treatment route you and your health care providers (HCP) choose will likely depend on a variety of factors, including not only symptoms but also lifestyle and preferences. your personal. These priorities — along with your values, priorities, and goals of care — will help determine the next steps of treatment.

“It’s not about ‘What’s the best drug we have?’ but what is the best drug for that particular patient,” he said. Flavia Nelson, MDdirector of the Center of Excellence in Multiple Sclerosis at the University of Miami.

Read “Beyond Physical: How MS Affects Your Life” >>

Because you are the ultimate expert when it comes to your body, you should have a say on how to manage your MS. Building a relationship based on mutual respect with your care team will help ensure that you take an active role in decisions about your treatment.

Koziol believes it’s important for people with MS to be involved in decision-making about treatment. “We have to be our own advocates every step of the way,” she said. “It starts with doing our own research and homework so we can ask educated questions about our health care providers and make sure we find the right ones. suppliers we feel respect us for.”

Of course, being an advocate isn’t easy, and dealing with a diagnosis can be overwhelming. So if you need support, organizations like National Multiple Sclerosis Association can help find resources, including important question to ask your HCP at your next appointment.

“Respect can come in many forms, including giving patients enough time to express their concerns and ask questions,” says Nelson. “In my experience, this makes a significant difference when it comes to improving their understanding of disease and its treatment — and therefore their health.”

Nelson likes to give her patients a few weeks to review their treatment options in detail once she presents them, then schedule a follow-up appointment. “This allows for more informed decision making and more realistic expectations,” she says. Nelson notes that the number of MS medications has increased dramatically over the past 10 years, so giving patients plenty of time to consider options will help them understand side effects and expected outcomes.

Patient involvement helps cure

Having a say in your MS treatment can make it more effective. Research shows that MS patients who share decisions about their treatment plans are likely to be better off follow the plan – lead to better outcomes when managing their disease.

“When a patient helps define their care, there is better compliance and trust in the system, which leads to better outcomes,” says Nelson.

Start by writing down everything before your appointment. This may include a list of your supplements and medications, any new medications you may be taking, current symptoms, and any lifestyle changes (eg, family stress). increase). Be sure to bring copies of information from other medical appointments to share with your HCP.

What does Nelson suggest that patients who want to take an active role in their MS treatment bring to their appointment? “All their questions.”

Make your voice heard

Before you can share your treatment options with a provider, you need to find someone who will listen to you. “Unfortunately, women’s health concerns are often overlooked in today’s medical culture, so as women, we need to understand and use the power of our power,” says Koziol. his voice.

“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 that will take your concerns seriously,” says Koziol.

If it is not possible to find another doctor or change doctors, outside resources such as Multiple Sclerosis Association of America and Multiple sclerosis organization provides educational programs, health care support, and other helpful options for people with MS.

An MS diagnosis can be scary, but getting involved in your own care can help you get the disease under control so you can move on with your life. “Leading with strength and empowerment, believing in yourself and your body, can be the key to putting MS in its rightful place,” says Koziol.

Resources
Multiple Sclerosis Association of America
Multiple sclerosis organization
National Multiple Sclerosis Association

This resource was created with support from Viatris.