7 Things You Need to Know If You Have Multiple Sclerosis
A multiple sclerosis (MS) diagnosis can feel overwhelming and isolating, especially if you don't know anyone else living with MS. While the neurodegenerative disease involves challenging symptoms, knowing what to expect and what resources you have available can help.
From tracking symptoms to connecting with support groups and research opportunities, below you'll find a few of the most important messages to carry with you throughout your experience with MS.
1. No two people have the same experience with MS.
The saying goes that 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. Some of the most 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; they may go away and not come back for months or years, or they may quickly get worse. If you meet others with MS or join a support group or message board, it can make you feel less alone to connect with others who are having a similar experience. At the same time, it's important to keep in mind that 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. If you're experiencing relapses or your MRI scans are showing new lesions, those are signs that you may need to update your treatment.
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, 219 studies are looking for 21,172 MS patients to take part in clinical trials researching potential new treatments. Potential new treatments 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? Start looking for trials in your area that may be right for you.
4. Your symptoms will most likely change over time.
MS symptoms, including disease progression, are different for everyone, but most people experience changes in their disease over the years. Most 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 symptoms that may be more disabling. 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, new research confirmed. The study found that RRMS patients treated in the first five years after diagnosis delayed the secondary progressive stage of MS.
5. Keep track of your symptoms to have a better conversation with your doctor.
MS symptoms can change from day to day. Tracking 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 find patterns. You can a 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 making keeping track of your symptoms easy and portable for you.
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.
If you decide to add complementary options to your treatment plan, discuss them with your doctor. 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 seek out a support group in person or online, connecting with the larger MS community can help you feel less alone, while keeping up-to-date on treatment options and advice on living well with MS. These organizations and websites share regular 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, the MSAA also offers assistance programs for receiving MS support items.
National MS Society: This large nonprofit organization funds research – investing more than $974 million 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 living with MS educate others about their condition through the MS Focus Ambassador program.
Or if you're interested in connecting with clinical trial options, start searching below.