Talking to your doctor about getting on the right treatment for your multiple sclerosis (MS) is an important part of living with MS. You may want to make sure that you're on the right disease modifying therapy (DMT) for you, as different DMTs can be right for different people. When first starting on a DMT, you may want to ask the doctor:
You and your doctor may work together to monitor how effective your DMT is for you in several different ways. Your doctor may want to look at whether you've had any increase in MS disease activity, including:
A relapse is when a new symptom, not brought on by fever or infection, temporarily appears. You'll know you're having a relapse because the worsened or new symptoms typically last at least 24 hours. Some doctors call relapses “flare-ups” or “exacerbations.” These terms mean the same thing—they are just different ways of describing relapses.
Contact your healthcare team as soon as possible if you think you’re having a relapse or if you have concerns with any side effects. Your healthcare team can talk to you about different things, including your current treatment to see if it's still working for you or whether you need to consider a different treatment option.
Lesions are evidence in your brain of nerve cell damage. Sometimes patients with MS can develop new or changing lesions in the brain or spinal cord without any outward symptoms and no increase in relapses. That means the disease is still progressing, even though you may not feel it. That's why it may be important to schedule regular MRIs with your doctor. MRIs help doctors detect lesions. If your MRI results show more lesions in the brain, or no decrease in lesions, you may want to talk to your doctor about your treatment options.
When monitoring your physical disability progression, your doctor may choose to use the Kurtzke Expanded Disability Status Scale (EDSS). The scale ranges from 0 to 10, and your place on the scale helps determine your approximate level of physical ability. If you experience any progression in physical disability, or have had a relapse that may have led to physical disability progression, your doctor may think about adjusting your current treatment plan.
Although your healthcare team may use this scale to evaluate your physical abilities over time, you should not use it to monitor yourself.
Your doctor is always the best resource when it comes to DMTs. You can help by taking an active approach to your own treatment and monitoring your symptoms before and after an appointment. Using a journal or calendar to write down how you’re feeling can help you have a more meaningful conversation with your doctor.
"Since I typically visit my neurologist every 6 months, it's important for me to keep a notebook journal handy in my kitchen. I record any changes in my daily MS experience and any questions or concerns I might have. It would be impossible for me to remember all the details otherwise.” —Gina F.
It may be important to consider many things when treating with a DMT. If you have any questions regarding your current DMT, or if you think you are having an increase in MS disease activity or concerning side effects, it may mean that you're not on the right DMT for you. Talk to your doctor if you have any concerns about your DMT, and ask him or her about other treatment options available to you.