FAQs

Don't be afraid to ask questions. If you're still wondering about something, the answer may be here. Remember, your doctor is always your best source of information about multiple sclerosis (MS).

IF YOU HAVE MS

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WHY DOES MS HAPPEN?

While the medical community still doesn't know exactly why MS happens, it is thought to be an autoimmune disease. With MS, your body attacks the myelin coating around your nerves in the brain. Myelin allows signals to travel quickly and efficiently throughout your body. When myelin is attacked, nerves become inflamed and relapses or periods of MS symptoms occur. Over time, as there becomes less myelin left to attack, your nerves become more exposed, and those symptoms become worse, even if your relapses have become less frequent. As MS progresses, damage builds up over time and increased disability can occur.


I'VE HEARD THE TERM "DISEASE PROGRESSION" A LOT, BUT WHAT EXACTLY DOES IT MEAN?

Disease progression in MS is used to describe a gradual transition to symptoms that are potentially getting worse and may occur even between relapses. It could also mean increased disability. If your MS is progressing, you may start experiencing more challenges.


WHAT ARE SIGNS THAT MY MS IS PROGRESSING?

Some of the most common signs that your MS may be progressing may include

  • symptoms that are new, current symptoms getting worse, or lingering between relapses

  • being unable to do things you used to, such as cooking for yourself, attending family and social events, or focusing at work

  • fewer signs of new inflammation on MRI scans

  • less frequent relapses, or no relapses at all


WHAT ARE THE MOST COMMON SYMPTOMS OF SECONDARY PROGRESSIVE MS (SPMS)?

When it comes to a diagnosis of SPMS, some of the most common symptoms include: difficulty balancing or walking, fatigue, problems with cognition, poor bladder control, constipation, muscle spasms, sexual dysfunction, and tremors. Read more about common progressive MS symptoms.


WHAT CAN I DO TO STAY PROACTIVE ABOUT PROGRESSIVE MS?

There are quite a few things you can do. Most importantly, stay in tune with how your body is feeling or how your symptoms may be changing. Are your symptoms getting worse or are you experiencing any new ones? Are you feeling different overall? Do you have less frequent, less intense relapses? Ask a person close to you those questions as well, as he or she may see things you don't.

The next thing you can do is have a conversation with your doctor about observations and changes you may be noticing. Try to stay up to date with the latest information about progressing MS. The SPMS Conversation Starter is a great place to start to help you and your care partner be proactive. For lifestyle tips on managing your MS, you can also visit the Resources page.

IF YOU'RE A CARE PARTNER

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I NOTICE THINGS ABOUT MY LOVED ONE'S MS THAT HE OR SHE DOESN'T SEE. I'M HESITANT TO BRING THEM UP. WHAT DO I DO?

Talking to a loved one about his or her condition getting worse can be difficult, especially if he or she isn't noticing the changes. But it's important to have that conversation. After all, you have his or her best interest at heart. You can also speak to his or her doctor about what's going on first to get some tips on how to delicately handle approaching the subject. The Caregiver's Guidebook is also a great resource for everything caregiver related.


MY LOVED ONE'S RELAPSES ARE FEWER AND FARTHER BETWEEN. IS THAT GOOD?

Fewer relapses might mean your loved one's current treatment plan is working. But if fewer relapses are accompanied by feeling worse overall and increased disability, then it may mean his or her MS is progressing.


WHAT RESOURCES ARE THERE FOR PEOPLE LIKE ME? I FEEL LIKE I NEED A BREAK SOMETIMES.

Being a care partner can feel like a full-time job. If you're looking for some guidance on sensitive topics such as taking a break, there are a lot of great resources available online. The value of making time for yourself cannot be overestimated. The Caregiver's Guidebook is a great resource to help you navigate caring for a loved one—and to make sure you're caring for yourself as well.


I FEEL UNCOMFORTABLE GETTING INVOLVED WITH MY LOVED ONE AND HIS OR HER DOCTOR. WHAT'S MY ROLE IN ALL OF THIS?

That's a good question. Every relationship has different boundaries, and every care partner has a differently defined role. But more often than not, care partners are involved when it comes to doctors. They're often the ones accompanying their loved ones to appointments and seeking information. You shouldn't feel as though you're "intruding," but check with your loved one to make sure he or she would like your support in speaking with his or her doctor. There's a very good chance he or she would welcome your support to help remember what to ask his or her doctor and to help take notes.

STAY INFORMED

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