Guidance for your discussions
Open communication with your healthcare professional is an important step in taking charge of your multiple sclerosis (MS) treatment journey. If you're ready to get the conversation going with your healthcare team but aren't quite sure where to begin, here are a few conversation starters to consider.
#1: Your MS symptoms and how they impact your life
When you start an MS treatment, your healthcare professional will explain that MS treatments are meant to slow the occurrence of relapses and lesions. They’re not meant to treat specific symptoms of MS, such as emotional changes or physical difficulties.
This doesn’t mean you shouldn’t talk to your healthcare professional about those symptoms, though. As mentioned earlier, MS management takes a team. Just because your MS treatment doesn’t address a symptom doesn’t mean your healthcare team can’t find another way to address it.
Always tell your healthcare professional about new or worsening symptoms you experience and how they’re affecting your day-to-day life. There are a variety of ways you and your healthcare professional can approach managing these symptoms beyond the disease-modifying therapy (DMT) you’re taking. You can learn about some of them here.
#2: Your “hidden” or most troubling symptoms
The symptoms of MS aren’t always easy to recognize. While some symptoms like physical difficulties can be quite obvious, other symptoms can be harder to see.
These less-obvious MS symptoms are often referred to as “hidden” symptoms. Cognitive changes can fall under this category, along with other symptoms like fatigue, anxiety, and depression.
Sometimes, talking to other people who have MS and have experienced these symptoms can help you recognize them in yourself. You may even learn some valuable coping or management strategies that you can then bring up with your healthcare professional.
Your healthcare professional should know which symptoms are having the greatest impact on your day-to-day life and current treatment plan. This knowledge can help them recommend management strategies or even shift medication to help ease the burden of those symptoms. Everyone experiences MS differently: it’s up to you to let your healthcare professional know how MS affects YOU.
#3: How you prefer to take your MS treatment
There are many options for treating MS. Some come as injections or infusions, while others are an oral tablet taken once a day.
Be sure to share your preference for how you'd like to take your medicine. Your healthcare professional needs to know this information, as it can help them make an informed decision about what type of treatment may be best for you.
#4: Fitting a disease-modifying therapy (DMT) into your life
Like the symptoms of MS, each DMT used to treat MS is different. Most have some advantages and drawbacks to consider, and some may fit your life better than others.
Some important factors to consider with any DMT include possible side effects, how it interacts with other medications you may be taking, whether it requires any dietary restrictions, and how long it stays in your body.
Your healthcare professional is familiar with the pros and cons of each DMT, and so talking openly about these subjects can help avoid DMTs that may not fit into your lifestyle.
#5: Long-term treatment goals
With so many changes happening as a result of MS, it can be easy to lose track of your long-term goals. For most people, those goals include reducing and recovering from relapses and reducing magnetic resonance imaging (MRI) activity known as lesions. DMTs are designed for that very purpose.
An important factor in the success of treatment with a DMT is your ability to take it as prescribed and continue to do so over time. Before you and your healthcare professional decide on a DMT, you should talk about whether or not you feel you’ll be able to take it as instructed.
Many factors can influence your ability to keep using a DMT. These include the DMT itself, along with external factors like your lifestyle, other medical conditions, or other medications you’re taking. DMTs that are easier for you to stay with may be more appropriate choices for treatment.
#6: Your present and your future
Though MS stays with you for life, life isn’t all about MS. In fact, talking about where you are and where you’re going in life can help you and your healthcare professional plan your MS management. Let’s look at a few examples:
Focused on your career?
- You and your healthcare professional can plan how to manage MS symptoms likely to affect you at work, such as cognitive changes, fatigue, or physical difficulties
Want to start a family?
- You and your healthcare professional can consider DMTs that are easier to pause if you and your partner are planning to start a family
Want to stay active with family and friends?
- You and your healthcare professional can focus on managing symptoms that get in the way of everyday life, such as fatigue, memory, and physical difficulties
Just looking to keep doing a hobby you love?
- You and your healthcare professional can identify what symptoms are most in the way and customize your MS management plan around them
Remember, you are still you. Your healthcare professional and treatment team are there to help you live life with MS on your terms. Share your goals and work together to achieve the flexibility you need as life changes.
Guide your discussion with what’s
important to you
There may be specific topics you’d like to discuss with your healthcare professional before choosing a DMT. Use the list of treatment factors below to help you identify what matters most to you before your next visit.
- Type of MS (such as relapsing-remitting MS or other forms of MS)
- Level of disease activity
- Any recent MS-related events you’ve experienced, like a relapse
How you experience MS
- Physical symptoms
- Mental/cognitive symptoms
- How other factors impact your daily life
- Your desire to start a family, now or in the future
- Your lifestyle choices (eg, career considerations, traveling for work or pleasure)
- Your short- and long-term goals and plans for the future
- The MS symptoms you want to focus on managing
- Other existing medical conditions
- Potential interactions with other drugs you are taking
- Your need for additional health monitoring
- Comfort level with the different methods of taking DMTs (eg, self-injecting, swallowing pills, traveling/waiting for infusions)
- Potential issues with taking your DMT as prescribed
- Drug cost and insurance coverage
- How well the DMT works to manage MS
- Whether it’s your first DMT or you’re switching
- Possible side effects
- How long the medicine stays in/affects your body after it’s stopped or paused
- How the DMT is taken (injection, oral, infusion) and how often
Whether the DMT can be taken at home or if you have to go to a
Whether the DMT needs to be taken with food or if it has food restrictions
(for oral forms)
- How the DMT is started
- Any special storage requirements (eg, refrigeration)