7 things you need to know if you have multiple sclerosis [updated]
Being diagnosed with multiple sclerosis (MS) can feel overwhelming and isolating. It's true that the neurodegenerative disease involves challenging symptoms, but knowing what to expect and how to tap into available resources can help.
Below, you'll find a few of the most important messages to keep in mind throughout your experience with MS.
1. No two people have the same experience with MS.
There's a reason people say, "if you've met one person with MS, you've met one person with MS."
MS symptoms are caused by damage to myelin in the brain. Common symptoms include bladder or bowel problems, difficulty walking or keeping your balance, dizziness, and fatigue. You may experience one or many of these symptoms in varying degrees and for different periods of time. Meeting others with MS or joining a support group or message board can help you connect with others who are having a similar experience. But remember: if one patient has a particular experience, that doesn't mean that you will, too.
2. Finding the right treatment is an ongoing process.
There are several disease-modifying therapies available for MS. While it's good to have options, it can also be difficult to choose the right treatment for you, as each has its own pros, cons, and side effects. Your doctor can help you find the right option for your lifestyle and symptoms, but finding the right fit can take time. Many people with MS also have to change medications throughout their disease. Signs that it might be time for a treatment update include experiencing relapses or MRI scans showing new lesions.
Even though everyone's experience with MS is different, it can still be helpful to talk with others living with MS about their experiences with different medications before switching.
3. Clinical trials are an option.
As of today, 241 studies are looking for 41,046 MS patients to take part in clinical trials researching potential new treatments. Research for MS can't move forward without clinical trial volunteers.
While it's a common belief that clinical trials are mainly a last resort for patients who have exhausted other options, in fact, there are clinical trials available for patients at any point in their disease journey after diagnosis. Some trials specifically look for patients who have been recently diagnosed to take part.
Interested? You can learn more here.
4. Your symptoms will most likely change over time.
As mentioned, MS symptoms are different for everyone, but one commonality among people living with MS is that most people experience changes in their disease over the years. The majority of people with MS are initially diagnosed with relapsing-remitting MS (RRMS), categorized by symptom flare ups followed by periods of time without symptoms. Between five and 15 years after diagnosis, most RRMS patients progress to secondary-progressive MS. This stage of MS is categorized by additional, more disabling symptoms. While progressive MS may still have periods of partial recovery, symptoms don't completely go away during these times, and symptoms become steadily worse.
Treating MS early on can help slow progression, research has confirmed. The study found that RRMS patients treated in the first five years after diagnosis delayed the secondary progressive stage of MS.
5. Track symptoms to improve conversations with your doctor.
MS symptoms can change daily, so keeping track of your symptoms can help you have a more informed conversation with your doctor about how well your treatments are, or aren't, working. Your tracker can also include information like how much sleep you got that night, your energy levels, whether or not you exercised, if you took any other medications, and even the weather that day, all of which can help you and your doctor identify patterns. You may even include how long the symptom lasted, and whether you've experienced it in the past or not. Using an app, notes on your phone, or a physical notebook can make tracking symptoms easy.
6. Understand complementary treatment options.
Complementary treatments are non-pharmaceutical approaches to care, such as supplements, exercise regimens, and diet, that are used in addition to medication. When these are used instead of medication, they're called alternative treatments.
More research is needed to further understand the potential effectiveness of complementary treatments. Exercise in particular can help many MS symptoms, including reducing fatigue, improving bladder and bowel function, and improving mood. A physical therapist can help you find exercises that work best for your symptoms and mobility.
Remember to discuss any complementary options to your treatment plan with your doctor before getting started. Supplements are not approved by the Food and Drug Administration (FDA), and may interact with your medication regimen. Don't start taking them until you've talked about the specific ones you're interested in with a medical professional.
7. There's an MS community you can connect with.
Whether you're looking for a support group in person or online, connecting with the larger MS community can help you feel less alone, and keep you updated on the latest treatment options. It's also a great way to get advice on living well with MS. The following organizations and websites share resources and ways to get involved:
MSWorld: This is an all-volunteer, patient-run organization that connects people living with MS through chat rooms, message boards, and other patient resources.
Multiple Sclerosis Association of America (MSAA): In addition to educational resources for patients, MSAA also offers assistance programs for receiving MS support items.
National MS Society: This large nonprofit organization funds research ($1.06 billion to-date) and education programs. Walk MS and Bike MS are popular fundraising programs that host events around the country if you're interested in getting involved.
MS Focus: The Multiple Sclerosis Foundation: MS Focus is committed to providing educational resources and ways to help those with MS educate others about their condition through the MS Focus Ambassador program.