Throughout your multiple sclerosis (MS) journey, one of the most important things to consider is monitoring your disease activity. This helps both you and your healthcare provider stay informed of the latest state of your disease. Keeping track will help you and your healthcare provider decide on the best treatment for you.
The first thing to note is the importance of magnetic resonance imaging (MRI). MRI scans:
Most people will have at least one MRI every 6 months to 2 years. Be sure to talk to your healthcare provider about scheduling regular MRIs. Ask what frequency would be right for you.
Your healthcare provider may also keep track of your physical ability on a scale like the Kurtzke Expanded Disability Status Scale (EDSS), which is often used in clinical trials. This can be used to measure your body’s ability as it relates to motion. The scale ranges from 0 to 10, and your place on the scale helps determine your approximate level of physical ability. You and your healthcare provider may consider setting a goal of maintaining a baseline and slowing physical disability progression.
Although your healthcare team may use this scale to evaluate your physical abilities over time, you should not use it to monitor yourself.
Talking to your healthcare provider about your progress may provide useful insights when trying to monitor your specific condition. Make sure to ask him or her any questions that you may have regarding your MS and treatment. Don’t be afraid to speak up about how you’re feeling. Consider asking the following questions at your next appointment to help you start the conversation:
While your healthcare provider is your best resource when it comes to monitoring your MS, taking an active approach to your treatment may be helpful.
“I use a monthly calendar to track my symptoms. I write down if I have a day with a lot of fatigue, cognitive fatigue, or any other MS symptoms. I also use this calendar to track if I exercised or if it was a good MS day. A few days before a doctor appointment, I will take a pen and highlight symptoms—yellow for fatigue, purple for spasticity, and so on. On the day of my appointment, my doctor can see at a glance what symptoms I have been experiencing.” — Jessica T.
Like Jessica T., it's helpful to monitor your own symptoms and proactively tell your healthcare provider how you’re feeling. You may find it helpful to keep a daily journal or calendar that you can share with your healthcare provider. Keep in mind, the more consistent and organized you are with tracking your symptoms, the easier it will be to share information with your healthcare provider.