Why should I take charge of my MS treatment?
There are many reasons why it's important to take charge of your treatment:
- You are the expert on your symptoms, your personal experience with MS, and your level of satisfaction with your MS treatment. This can provide valuable information to your neurologist in guiding your treatment.
- Finding optimal treatment as early as possible can slow down the impact of MS on your life:
- Researchers have discovered that taking control of your disease with effective treatment during early years may help reduce the risk of MS symptom progression.
- The more relapses you have in the first 2 years of the disease, the greater your risk of disability later on.A study has shown that 28% of people who experienced relapses had an increase of 1.0 EDSS (Expanded Disability Status Scale) units or greater approximately 60 days after experiencing a relapse.
- If your MS symptoms affect your ability to use your medication as prescribed, then you will not get the full benefit of your treatment.
- Even when you're not having relapses, your MS may still be causing damage.Your neurologist can use tests such as MRI (magnetic resonance imaging) to measure markers of MS damage such as brain lesions. To learn more about MS markers, see MS treatment expectations.
How do I take charge of my treatment and advocate for myself?
Discuss optimal treatment with your neurologist early in your disease. While you are on treatment, it's important to have regular discussions with your neurologist about optimal treatment.
Use the MS Treatment Satisfaction Questionnaire to prepare for your visit. You can also use the Doctor Discussion Guide to help guide the discussion with your neurologist about your MS treatment options.
What if I feel uncomfortable talking to my neurologist?
Here are some easy tips to address your concerns when speaking to your neurologist about MS treatment:
- I'm not sure what information to share with my neurologist or how to get organized for my visit.
Use the MS Treatment Satisfaction Questionnaire to help you organize your thoughts, questions, and information so you'll have all the facts at your fingertips. You can also use the MS Fact vs. Myth to discuss something that you didn't know before.
- I'm not sure which questions to ask my neurologist.
Use the MS Doctor Discussion Guide, which has a list of questions you can ask your neurologist.
- I'm worried that my neurologist may not take my requests seriously.
Learn to speak a bit of your neurologist's language. Read MS treatment expectations to learn more about measures of MS disease activity such as relapse rate and brain lesions on MRI, and use this specific language when talking to your neurologist about your treatment. Remember that you are the expert on your own symptoms and experience with MS treatment. If you are already on treatment, don't hesitate to mention whether you have had a relapse or any changes in your symptoms, whether you are experiencing any side effects with your current medicines, or any other concerns or issues you may have with your current treatment. Your neurologist won't know unless you tell him or her, and this information will help you and your neurologist choose an appropriate treatment that fits your lifestyle.
- I'm concerned that I'll forget what the neurologist told me.
Use the MS Doctor Discussion Guide to keep track of the questions to ask your neurologist and write in the neurologist's answers during your visit. Or bring along a trusted friend or family member to take notes for you.