Every good conversation starts with listening. And the more we listen to people living with MS, the more we hear that everyone has questions. While you may not have all the answers, asking questions about living with MS can help you and your doctor make better choices about your care plan.
We’ve heard your questions. So let’s talk about MS.
I feel fine. I can just skip that checkup with my doctor, right?
The symptoms of MS are different for everyone. But the causes of relapses and symptoms are the same—underlying nerve damage and lesions in the brain and spine. You may not immediately notice the effects of lesions and nerve damage. That’s why they are sometimes described as silent MS activity. In some cases, the silent activity of MS takes a long time to cause physical problems that you notice.
So even though you may not have symptoms right now, it is important that you and your doctor continually keep track of all MS activity in your body. This knowledge can help you make informed decisions about your care plan.
Which symptoms are no big deal? Which ones should I pay attention to?
Some people with MS experience physical symptoms, cognitive symptoms, or both. The causes of these symptoms are the same—underlying nerve damage and lesions in the brain and spine. So even a small amount of MS activity, whether you feel it or not, can put you at an increased risk of progression later.
Common symptoms of MS include:
- Cognitive impairment: problems with attention, reasoning, and memory (i.e., “brain fog”)
- Clumsiness, poor balance, and vertigo
- Vision disturbances or loss of vision
- Problems with speaking
- Sensitivity to temperature
There may also be MS activity you do not feel at all. This silent MS activity occurs without symptoms. So while you may not feel anything, it’s possible your MS may still be progressing. That’s why it’s important that you and your doctor keep track of your MS activity.
When it comes to relapses, how many is too many?
If you have relapsing MS, the time to start talking with your doctor about relapses is before you have one.
A relapse is typically defined as the appearance of new symptoms that last more than 24 hours, and is separated from the previous attack by at least 30 days. Relapses are another sign of MS activity. So in short, one relapse means it’s time to talk to your doctor.
Studies have shown that having frequent relapses early in the onset
of MS can lead to having more disability later. This matters, because
even small amounts of disability progression can have a big impact on
your life. So don’t assume relapses are something you just have to
accept with MS.
I need to get an MRI. What is my doctor looking for?
Doctors may recommend an MRI based on your individual situation. These scans help give your doctor a better sense of what to expect in the future by tracking the presence of lesions inside the brain and spine. Some lesions may cause symptoms right away, but they may also cause progression and disability later in the course of your MS. Having an MRI can be the best way to track the silent activity of MS.
To see if new lesions are forming or existing ones are getting bigger, your doctor may request different types of MRI scans. These scans include:
Show inflammation in the brain (a sign of a new or enlarging lesion) and the difference between active and inactive lesions
Provides information on the total amount of old and new lesions
Better identify brain lesions that are associated with MS
Identify lesions in the spinal cord
There’s a significant amount of research connecting MS activity seen on MRIs to elevated risks of MS progression later. Understanding how your MRIs change over time can help you and your doctor make decisions about the care of your MS. Talk with your doctor about how often you should get an MRI to track your MS.
I think I’m doing fine. But how do I know?
Doctors use these tests and tools to find out if your MS is changing over time, and if so, how much. Your doctor may measure your physical abilities or mental acuity, or may gather images of your brain and spine. Some of these tests may include:
Timed 25-Foot Walk Test (T25-FW)
This test records your walking ability by calculating the average time it takes for you to walk back and forth 25 feet. Over time, the results from these walking tests will help you and your doctor keep track of how your condition is changing.
9-Hole Peg Test (9-HPT)
This test records the time it takes for you to place and then remove nine pegs into a board. This information is useful for keeping track of your motor skills. To calculate an average, your doctor or a nurse will ask you to complete the test twice.
Magnetic Resonance Imaging (MRI)
These scans are used to track the presence of lesions inside your brain and spine that are caused by MS. MRIs can show if new lesions are forming or existing ones are getting bigger. Depending on your individual situation, your doctor may recommend periodic MRIs.
Each of the tools mentioned above can help you and your doctor evaluate your MS, but you play an essential role in keeping track of your MS, too. It is important for you to tell your doctor about any changes in your health or day-to-day functioning. This includes things that may not be visible or noticeable to others, such as fatigue and cognitive function.
Expanded Disability Status Scale (EDSS)
This scale is often used in clinical studies to evaluate if and how MS is progressing. The series of ratings measures changes in cognitive abilities, walking ability, bowel and bladder function, vision, and other senses.
I have PPMS. Is there additional information I should be aware of?
If you have PPMS, you are not alone. About 15% of all MS cases are PPMS, representing over 50,000 people in the United States. Even though PPMS is less common, the medical community, including Genentech, has engaged in a renewed commitment to addressing the needs of people with PPMS.
PPMS is a form of MS that progresses steadily over time, without periods of relapse or remission. It’s important to keep track of what’s happening with your PPMS, and to share that information with your doctor.
PPMS may cause symptoms you notice, but silent changes (MS activity without noticeable symptoms) may be occurring without you being aware. Silent activity may include lesions in your brain and spine and changes in brain volume. An MRI can reveal whether new lesions have developed or existing ones have grown.
When you and your doctor are aware of silent changes, as well as changes in your symptoms, you have a more complete picture of your PPMS. This information can help you and your doctor make informed decisions about your care plan.
You can stay on top of PPMS by:
- Keeping a log of your symptoms
- Scheduling regular visits with your doctor
- Telling your doctor about any changes in your health
- Getting MRIs (when recommended by your doctor)
My doctor always asks if I have any questions. I never know what to ask.
Asking questions about your care and treatment is an important part of playing an active role in the management of your MS. Consider writing down your thoughts or putting notes in your phone before your next appointment to make it easier to have a productive conversation with your doctor.
Here is a list of questions you may wish to print or download to ask your doctor:
Living with MS
- How does nutrition impact my health and my MS?
- How does stress affect my MS, and what can I do about it?
- What should I do if my MS is causing me to feel anxious or depressed?
- Would glasses help with my MS-related vision problems?
Understanding MS Activity
- Are there specific symptoms I should be looking out for?
- How should I keep track of my symptoms?
- How do I know if changes to my health are related to my MS?
- What should I do if I experience a new symptom for longer than 24 hours?
- How do relapses today affect what happens with my MS in the future?
- How can my MS change over time?
Understanding Lesions, the silent activity of MS
- What are the different characteristics of lesions, and what do they mean?
- How do lesions today affect what happens with my MS in the future?
- How have my lesions changed over time?
Monitoring My MS Activity
- Are there tests we should be doing to track my MS, and how frequently should we do them?
- What does an MRI show?
- How frequently should I be getting MRIs?
- How have you determined the frequency of these MRIs?
- What are the different kinds of MRIs, and what do they say about my MS?
- How do I prepare for these tests and exams?
- Are there areas of my scans you are monitoring, and if so, why?
- Are there differences between these scans and my last scans? What are the differences?
What else can I do?
To assist your healthcare team, it’s helpful to be knowledgeable about your MS activity, recognize changes in your health, and communicate those changes to your doctor.
Stay on top of your MS activity.
There are different kinds of disease activity in MS, including physical and cognitive symptoms, relapses, and lesions. Even a small amount of early MS activity can put you at an increased risk of progression later. That’s why you should take note when your MS is active and make stopping MS activity one of your goals.
Keep track of your MS.
It’s important for you to tell your doctor about any changes in your health or day-to-day functioning, including things that may not be visible or noticeable to others, such as fatigue and cognitive function. Even small changes in your MS may mean that your MS is active, and that it is time to discuss your care plan with your doctor.
Get to all of your appointments.
Be sure to follow all of your doctor’s instructions, including taking every test and getting every MRI. This information is important to ensuring you get the best care possible.
Always talk to your doctor any time you have questions or concerns about your health or your care. Together, you and your doctor can work to optimize your care plan.
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