If you think your MS may be changing, it’s time to start pushing back
Consultations can be short—reflect on any changes in your MS over the past 6 months to have a more focused and optimized conversation with your healthcare team.
Understanding MS starts with the basics
There is more than 1 phase with MS. But they are all at different stages of progression.
Frequency of relapses matter
To be labeled a new relapse, there must be 30 days of stability (remission) in between cognitive or physical symptoms. If your MS begins changing, however, you may or may not bounce back from a relapse as well as before, or your symptoms may not go away completely. This may get in the way of doing everyday activities. While everyone is different, studies show that more frequent relapses early on may lead to a higher likelihood of progression down the road.
Identifying MS progression
Frequency of relapses matters
The progression of MS can be hard to detect. Your symptoms may become more challenging and you may even experience fewer relapses. Symptom-tracking tools like the Your MS Questionnaire can help you identify any changes in your MS over a period of time, empowering you to have more focused discussions with your healthcare team. The sooner you tell your doctor about your MS changes, the better the chance you may have of delaying progression.
Your symptoms are getting worse, you’re experiencing new ones, or they’re lingering between relapses
Mental activities are harder than they were in the past.
Physical activities are harder to do than they were in the past.
Relapses may occur less often.
Difficulty finding words or trouble speaking
Worsening memory
Trouble thinking quickly and clearly
Difficulty with movement, balance, and walking
Bladder and bowel problems
Fatigue and feeling extremely tired
MS affects your CNS, which includes your brain and spinal cord. It's made up of nerves that send signals all around your body. These signals control many things, such as balance, coordination, and memory.
White blood cells in your immune system mistake the coating around your nerves (myelin) and nerve fibers (axons) for something that shouldn't be there. Think of myelin as the insulation around electric cables.
The white blood cells then attack the myelin, creating inflammation, which damages the myelin and exposes the axons
When myelin is damaged, signaling slows or becomes disrupted, which may cause relapses. A relapse can last anywhere from a day to months, until the brain can repair the damage.
As MS damages your nerves over time, there may be little or no myelin left.
Therefore, there is nothing to become inflamed or cause a relapse.
You may also start to see lesions appearing or becoming bigger on MRI scans
The white blood cells then attack the myelin, creating inflammation, which damages the myelin and exposes the axons
Does the symptom persist?
YES: Schedule follow-up appointment
NO: Keep watch for symptom change
Does the symptom persist?
YES: Discuss persistent symptom changes with your healthcare team
NO: Keep watch for symptom changes
Preparing for your next consultation
The Your MS Questionnaire asks about your MS in the past 6 months including any relapses, your symptoms, and their impact on your daily life. This information will empower you to have a focused discussion with your healthcare team about any changes to your MS. You may wish to ask a family member, partner, or caregiver for help when completing the questionnaire.
Caregiver contributions matters
When a loved one’s MS is changing, things may become different than they were before—but the more you know, the more you can help them during this transition. It may be difficult for people with MS to notice their symptoms changing or worsening. That's why it's important to support your loved one by being honest about any changes you may have noticed. Your input can help make a difference in the management of your loved one's MS. Don’t hesitate to ask questions every step of the way. You, your loved one, and their healthcare team can come up with a plan to help navigate your loved one's MS journey
Be mindful of changes
Your perspective on how your loved one is doing matters. It’s important to notice how their MS changes over time, and to help them have an honest conversation with their healthcare team.
You can also assist your loved one in completing the Your MS Questionnaire. Your perspective on their MS can lead to more informed conversations with their healthcare team.
The SPMS Conversation Starter can help make the discussion easier.
You can use it to:
- Record how MS is affecting your loved one now, compared with 6 to 12 months ago
- React to what you have observed
- Use those observations to spark a conversation with your loved one’s healthcare team
Sharing a language
RRMS. SPMS. Progression. There is a new vocabulary your doctor may be using to describe the changes with your loved one. Understanding these terms can help make conversations with your loved one and his or her medical team more effective.
Here are some terms that might be helpful in understanding SPMS:
- Relapses: A period of time when your loved one’s symptoms suddenly worsen
- RRMS: The phase of MS your loved had before SPMS, relapsing-remitting MS (RRMS) is characterized by periods of relapse and partial recovery.
- SPMS: This phase of MS comes after a person has had RRMS for many years. Your loved one may have fewer relapses, but new or worsening symptoms may accumulate.
- MS progression: As MS progresses, your loved one may experience new or worsening symptoms, and increasingly struggle with daily activities and chores.
- Neurodegeneration: Damage to the nervous system -particularly the brain- that is the cause of your loved one’s symptoms.