The MS story

MS doesn’t look the same for everyone. When people think of Multiple Sclerosis (MS), they commonly think of relapsing-remitting MS (RRMS). But secondary progressive MS (SPMS) is a different type that not many people are talking about.

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Understanding MS starts with the basics

There is more than 1 phase with MS. But they are all at different stages of progression.

 

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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.

RRMS may progress to SPMS

Most people with RRMS eventually develop a different kind of MS called SPMS. This happens gradually over many years, causing symptoms to get worse overall. This can potentially lead to more noticeable symptoms or increased disability.

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Identifying progression

Early detection matters

The progression of Multiple Sclerosis (MS) can be hard to detect. Your symptoms may become more challenging and, while it might seem strange, you may even experience fewer relapses, not more.

These changes may be frustrating and unsettling. But the sooner you and your doctor identify secondary progressive MS (SPMS), the better the chance you may have of slowing it down.

Understanding MS starts with the basics

There is more than 1 phase with MS. But they are all at different stages of progression.

OLD MEN

 

How to tell if your MS changing

To determine if your MS is progressing, your doctor needs to know two main things: how long you’ve had MS, and how your MS has changed over time. Here are some signs to pay attention to:

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Your symptoms are getting worse, you’re experiencing new ones, or they’re lingering between relapses.

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Mental activities, such as reading a book or concentrating on work, are harder than they were in the past.

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Physical activities, such as walking your dog or visiting family, are harder to do than they were in the past.

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You may get relapses less often.

Recognizing the signs of SPMS

Know what to look for

While everyone’s Multiple Sclerosis (MS) may progress differently, there are common signs to look out for:

• Symptoms that are getting worse
• New cognitive or physical symptoms
• Less frequent, less intense relapses

Be sure to discuss anything you notice with your doctor.

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CONVERSATION

Track Your MS changes better to have more focused conversation with your doctor.

Questionnaire

 

Symptoms that commonly get worse as MS changes

 

Cognitive Changes

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Difficulty finding words or trouble speaking

DIALOG

Worsening memory

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Trouble thinking quickly and clearly

Physical Changes

SLIP

Difficulty with movement, balance and walking

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Bladder and bowel problems

ZZZ

Fatigue and feeling extremely tired

 

How were you feeling a few months ago?

Think back to how you were feeling 6 to 12 months ago. Then ask yourself:

  • Is caring for my family or home becoming more of a challenge?
  • Am I missing more days of work, if I’m working at all?
  • Am I missing out on spending time with loved ones?
  • Am I taking more naps throughout the day?
  • Am I taking more medications to manage my symptoms?

If the answer to some of the above questions is yes, it may mean your MS is transitioning to secondary progressive MS (SPMS).

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How MS progresses

Understanding why your MS is changing is the first way to push back on progression

Unfortunately, the reality is Multiple Sclerosis (MS) is progressive in most cases. And if MS progresses, important changes can happen in the brain. You may get
new symptoms or you may notice symptoms you've had before may begin to linger between relapses.

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What’s going on inside your body

There are 2 things in common with all stages of MS progression: the central nervous system (CNS) and inflammation.

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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 breathing or speaking.
 

MS is considered an autoimmune disease. 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.
 


The white blood cells then attack the healthy nerves, creating inflammation, which damages the myelin and exposes the axons.
 

When your myelin is inflamed and damaged, you may experience a relapse—which 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.

MS changes over time

As MS progresses, there may be less myelin left to attack, and your axons become more exposed

 

NERVE

 

Picture your nerves as wires that have electrical signals trying to move through them, but no protective coating.
Because of the lack of protective coating, your nerve signals, like electrical signals, can be slowed or stopped altogether. Additionally your axons, can be damaged by causes other than loss of myelin.

Damage to your nerves (neurodegeneration) builds up, which causes symptoms to worsen. This can lead to disability that can impact your daily activities. Doing simple chores around the house or spending time with family and friends may become increasingly difficult.

Although thinking about the transition to secondary progressive MS (SPMS) isn’t easy, you shouldn’t wait to take action. Taking a fresh look at your MS and discussing any changes with your doctor may help you adjust to new challenges.

 

When to talk to you Doctor about your changing MS

There are many tools and tests your doctor can use to see if your MS is changing, like the Expanded Disability Status Scale (EDSS). These tests depend on your involvement in sharing symptoms as soon as they appear.
Below is a chart to help you decide when it's important to discuss your changing MS with your doctor.

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Describe new or worsening symptoms and schedule a follow-up appointment
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Does the symptom persist?
YES: Schedule follow-up appointment
NO: Keep watch for new symptoms
arrow 6 months
Does the symptom persist?
YES: Discuss progression with your doctor
NO: Keep watch for new symptoms

Your contribution matters

How you feel about someone doesn’t change when they are diagnosed with secondary progressive Multiple Sclerosis (SPMS). But some things will become different. The more you know, the more you can help your loved one during this transition.

Don’t hesitate to ask questions every step of the way. You, your loved one, and your healthcare team can come up with a plan that everyone agrees on. Together, you can help improve your loved one’s journey.

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Be mindful of changes

Your point of view about how your loved one is doing matters. It's important to notice how his or her MS changes over time, and to have an honest conversation with a doctor about it.

Over the last 6 to 12 months, has your loved one’s MS changed?

•  Are there noticeable changes in his or her mood?
•  Do you run errands or finish chores that he or she used to do?
•  Is he or she missing out on activities or special events, such as a child's sports game or birthday party?
•  Have you noticed any changes in his or her memory or concentration, like forgetting an anniversary or difficulty focusing on a task?
•  Has he or she developed a new symptom of MS that hasn’t gone away?

 

If the answer to one or more of these questions is yes, then it’s time to talk about it. The SPMS Conversation Starter can help. With it, you can:

•  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 doctor

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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.

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