What to expect when you've been diagnosed with multiple sclerosis
Being newly diagnosed with a medical condition can be confusing, but finally being able to give a name to unexplained symptoms, such as vision problems, numbness, and tingling, can offer a sense of relief and comfort. When it comes to multiple sclerosis (MS), knowing what to expect about the symptoms, treatment options, and disease management can be instrumental in developing a positive plan for the future. What is it like living with MS? We share key symptoms you should know about, the importance of a care team and treatment plan, and helpful resources that are available to you online.
No two people have the same experience with MS, and therefore, not everyone will have the same symptoms. However, having an idea of what symptoms you may experience can help you be better prepared for them.
These MS symptoms are some of the more common ones:
- numbness or weakness
- balance problems
- bladder and bowel issues
- pain when moving your eyes
- loss of vision
- dizziness or vertigo
You may experience one or many of these symptoms in varying degrees and for different periods of time. Just remember: if one person with MS has a particular experience, that doesn't mean that you will, too.
Sometimes, there are relapses of symptoms. Approximately 85 percent of Americans with MS are initially diagnosed with relapsing-remitting MS (RRMS), which is characterized by relapses of new or increasing neurologic symptoms. Relapses (also called exacerbations) are followed by periods of partial or complete remissions (recovery). Others with MS don’t suffer from relapses, but instead, experience a slow progression of the disease, which is called primary-progressive MS (PPMS).
What happens after an MS diagnosis?
You might be wondering what happens after you receive that initial MS diagnosis. For many, work, school, family, and social lives will continue as they were, but might take new forms. Some aspects of the disease may impact your life every day, like learning to plan around symptoms, such as fatigue, loss of vision, or numbness and weakness. Other aspects might force larger considerations, such as deciding whether to grow your family or whether to change your career. You’ll need to review your options and make changes from time to time, and you’ll often need to keep your MS in mind when making those choices. These are three important steps to take after you receive an MS diagnosis:
Build your healthcare team: Having a healthcare team you can rely on is key to managing your MS. The National Multiple Sclerosis Society maps out a comprehensive picture of what your healthcare team may look like. You’re likely to work with one or a combination of the following specialists to manage your MS care: neurologist, nurse practitioner or a physician assistant, nurse, rehabilitation specialists (physical therapist, occupational, neuropsychologist), mental health specialists (psychiatrist, psychologist, social worker), wellness professionals (nutritionist, personal trainer), ophthalmologists, primary care providers, and pharmacists. It’s important to build a team that you trust and that will support your needs.
Find the right treatment(s): Medications can help reduce the frequency and severity of attacks. Other drugs and therapies can help alleviate symptoms. Treatment can also help change the course of your disease and slow its progression. Your healthcare team may suggest starting treatments soon after diagnosis. This may be to help with individual symptoms, or to reduce the impact of relapses if you have relapsing-remitting MS.
As listed by the National MS Society, the following US Food and Drug Administration (FDA) approved disease-modifying therapies for MS have been found through clinical trials to reduce the number of relapses, delay progression of disability, and limit new disease activity.
- Injectable medications
- Avonex® (interferon beta-1a)
- Betaseron® (interferon beta-1b)
- Copaxone® (glatiramer acetate)
- Extavia® (interferon beta-1b)
- Glatiramer Acetate Injection (glatiramer acetate -generic equivalent of Copaxone 20 mg and 40 mg doses)
- Glatopa® (glatiramer acetate - generic equivalent of Copaxone 20mg and 40mg doses)
- Kesimpta® (ofatumumab)
- Plegridy® (peginterferon beta-1a)
- Rebif® (interferon beta-1a)
- Oral medications
- Aubagio® (teriflunomide)
- Bafiertam™ (monomethyl fumarate)
- Dimethyl Fumarate (dimethyl fumarate - generic equivalent of Tecfidera)
- Gilenya® (fingolimod)
- Mavenclad® (cladribine)
- Mayzent® (siponimod)
- Ponvory™ (ponesimod)
- Tecfidera® (dimethyl fumarate)
- Vumerity® (diroximel fumarate)
- Zeposia® (ozanimod)
- Infused medications
- Lemtrada® (alemtuzumab)
- Novantrone® (mitoxantrone)
- Ocrevus® (ocrelizumab)
- Tysabri® (natalizumab)
While it's good to have options, it can also be difficult to choose the right treatment for you, as each has its own benefits and side effects. Talk about the options for treating any symptoms you’re experiencing with your health professionals.
Get support: Newly-diagnosed MS patients and their care partners can find strength in community. From in-person support groups to online communities, there are many ways to connect with other MS patients, caregivers, advocates, and resources. No two people with MS are the same, so finding a group that is a good fit for you is key. In a recent blog post, we shared easy-to-access support systems that people with MS, their families, and their care partners should access. From Facebook and Instagram to advocacy groups like the National MS Society and Multiple Sclerosis Association of America (MSAA), we share some of the most salient features of each platform. The most important thing is to connect with others who are experiencing the same disease.
New treatments for MS can’t move forward without volunteers for clinical trials. To learn more about clinical trial opportunities for people living with MS, click the link below.