When you learn that you have MS, you'll have lots of questions about what to do next and how to manage the effects of this long-term disease. With your doctor's help, you can control your symptoms and learn how to live with some of the challenges you may face.
What Should You Do First?
You may feel overwhelmed and scared at first. It often helps to start carefully gathering the facts about MS. Excellent resources online can teach you more about the symptoms, stage, and outlook of your disease.
Also, it’s important to consult in detail with your doctor as soon as possible so that you know what’s most important to do first for your treatment. Earlier treatment can lead to better outcomes.
Therapists and support groups can help you and your loved ones manage the emotional strain and family dynamics that can change after your diagnosis. This is a common and natural need, so don’t hesitate to reach out. Spouses and family members can also find lots of help online, both about the disease and how to be supportive.
Because treatment can be complex, there are experts, sometimes called “navigators,” who can help you through all the various aspects of your disease.
Here are some places you can explore online. Or use the phone numbers if you want to speak with someone:
- Multiple Sclerosis Foundation, 888-673-6287
- Multiple Sclerosis Association of America, 800-532-7667
- National Multiple Sclerosis Society, 800-344-4867
- National Institute of Neurological Disorders and Stroke, 800-352-9424
What Does It Mean to Have MS?
When you have multiple sclerosis (MS), your immune system -- the body's defense against germs -- attacks myelin, the layer that surrounds and protects nerves. Damaged nerves can't carry signals as well between your brain and spinal cord and the rest of your body.
Relapsing-remitting multiple sclerosis, or RRMS, is the form of MS most people with the disease have first. It cause flares of symptoms -- called relapses -- followed by periods when symptoms improve or go away, called remissions.
What Is a Flare?
You can tell that you're in a relapse if your symptoms start at least 30 days after your last attack, and they stick around for 24 hours or more. For it to be a real flare, your symptoms must not have another obvious trigger, like a virus.
No two flares are the same. Sometimes your symptoms may be so mild that you barely notice them. Other relapses can be severe enough to affect your everyday life.
What Symptoms Can You Expect?
MS damages nerves differently in each person, so everyone's symptoms are different.
The symptoms you're most likely to have soon after you're diagnosed with RRMS are:
- Numbness or tingling
- Double vision or vision loss
- Bladder and bowel problems
- Trouble with balance and walking
- A hard time learning or remembering
You may have some or all of these symptoms. They'll last for at least 24 hours. Once you go into remission, your symptoms will get better or go away for a period of time.
How Can Treatments Help?
The way to slow MS damage and prevent flares is to start treatment as soon as possible after you're diagnosed. The FDA has approved nearly 20 drugs called "disease-modifying therapies" for MS.
Ask your doctor about the benefits and risks of each MS medicine. Together, you can decide which one is best for you.
MS medicines reduce flares, but they don't prevent them. You still might need other treatments to control your symptoms.
To manage your MS, you'll need to stay on medicine long-term. It's important that you follow your treatment plan and take each dose. If side effects bother you, ask your doctor if you can switch to a different drug or a lower dose.
Who Can Help You Manage Your MS?
You'll see a whole team for MS. Your neurologist will oversee your treatment.
You may also visit one or more of these specialists:
- MS nurse
- Physiatrist, a doctor who manages your medical issues while you go through rehab and physical therapy
- Physical therapist
- Occupational therapist
- Speech/language pathologist
What Should You Tell People?
Whether you tell others about your MS and how much you reveal are up to you. You may need to open up to the people closest to you if your symptoms make it hard for you to go out and take part in social activities.
Telling the people closest to you can be helpful. Once your friends and family know, they can give you the help you need. They'll also understand why you may need to miss certain events.
Start with the people in your inner circle -- your family members and close friends. You may also need to tell people at work if MS makes it harder to do your job.
How Should You Manage Your Emotions When You Get a Diagnosis?
If you start to feel worried, anxious, or depressed after you learn you have MS, you don't have to face things on your own. Your treatment team can help you work through these feelings.
Talk to your doctor, or see a therapist or counselor. You can also join a support group through the National MS Society. You'll meet people who understand just what you're going through, and can offer tips to help you manage your disease.
What Can You Expect?
It's hard to know what the future holds with MS. Everyone who has this disease is different. Some people have only a few mild attacks. Others get more severe and frequent attacks. The progression can be hard to predict.
Although there's no cure for MS, treatments can protect against nerve damage, slow the disease, and prevent you from being disabled. You'll have the best outlook if you stick to your treatment plan and take good care of yourself.