Your First Year With MS
Hearing "You have multiple sclerosis" takes your breath away. Knowing what's next helps. Here's your first-year plan.
Maybe it began with memory lapses or missing words. Then you started tripping for no reason, which upset you even more. (You thought maybe it had something to do with fatigue or working too much or not sleeping well.) It took you waking up one morning with terrible eye pain and blurred vision to convince you to see your doctor, who insisted on doing a battery of tests including a brain MRI to rule out other possible conditions. You received a treatment with intravenous steroids for few days. Then, you rapidly got the news: You have multiple sclerosis (MS)—and it came as a shock.
“Even if there’s a sense of immediate relief to have a label to describe the symptoms, this is often immediately followed by fear of the unknown—and a lot of questions,” says Abbey Hughes Ph.D., assistant professor of physical medicine and rehabilitation at Johns Hopkins University School of Medicine in Baltimore.
Most people diagnosed with MS have the have relapsing-remitting form, or RRMS—affecting roughly 85% of all people with this condition. If you’re among them, here’s what you can expect in the weeks, months, and years after your diagnosis. But know this: Life-changing therapies for MS have been developed in the past two or three decades, allowing for longer periods of symptom-free remissions followed by less severe disease flares.
“A patient who's diagnosed relatively early in their clinical course of disease, in most cases, will experience control of the disease that's long lasting,” says Stanley Cohan, M.D., medical director of the Providence Multiple Sclerosis Center in Portland, OR. So go ahead and take that deep breath.
1 Week After Diagnosis
Take some time to process the news. Dr. Hughes suggests reviewing the materials your doctor gives you—but it’s certainly OK to set them aside for a day or two as you adjust to your new reality. Once you’re ready to do so, go through them and then visit the National Multiple Sclerosis Society and Can Do MS websites to learn more about RRMS. As you read, draft a list of questions to ask your doctor at your next appointment.
“We provide a lot of written materials because you're not going to remember all of what you’re hearing,” says Dr. Cohan. “We’ll restate the information and discuss it with you over time, but we want to fortify you, as much as possible, with information from the beginning.”In addition, eating a healthy diet can help control body weight and cholesterol levels, which have a positive impact on the course of the disease. Talk to your neurologist about the role of vitamin D in MS and ask about the optimal dose for vitamin supplementation.
You’ll have multiple medical appointments in the immediate weeks and months following your MS diagnosis. Because of this, Dr. Cohan suggests that you secure a patient navigator (if your clinic provides one), who can help you connect with providers and manage your schedule. During these first few days after diagnosis you’ll also need to establish your care team, which might include a neurologist, nurse practitioner, psychologist, physical therapist, occupational therapist, speech pathologist, obstetrician/gynecologist, urologist, and ophthalmologist, depending on your specific symptoms.
2 to 4 Weeks After Diagnosis
So much new information can be overwhelming, so consider asking a loved one to accompany you to your next appointment, Dr. Hughes suggests. “You'd be very surprised at how differently people hear information and what they remember—and don’t remember—after an appointment,” she adds. Your loved one, then, can be your backup—and even help you take notes.
Speaking of loved ones, be sure to build a support network early on: Friends and family members might offer to bring meals or pitch in with chores while you navigate medical appointments. Go ahead and take them up on those offers—and don’t be afraid to ask for additional help if you need it.
“You’ll want to beef up your level of support and find those people who are going to be with you throughout the process,” Dr. Hughes says.
Among those many appointments is one with your neurologist, who’ll review your MRI and other screening tests to create an MS treatment plan. If the scans show the disease is active (called a flare), you might need a course of steroids to reduce inflammation and help control the symptoms, Dr. Cohan says. You’ll also start on long-term medications to help keep your MS in check. “A patient who is diagnosed relatively early in their clinical course of disease, will, in most cases, experience control of the disease that's long lasting,” he adds.
While your neurologist treats the physical symptoms of RRMS, your primary care physician may want you to examine your lifestyle choices, and may ask you to try to quit smoking and/or lose weight, which, if not addressed, can both worsen symptoms and speed up disease progression.
1 to 5 Months After Diagnosis
Once the dust settles after first being diagnosed, you’ll want to deal with the possible emotional toll of the disease and protect your mental health. “Because the emotional symptoms that can occur with MS”—including grief, stress, depression, and anxiety—”happen just as early, and sometimes earlier, than the physical symptoms, it's certainly recommended and ideal to have a psychologist on [your treatment team] early on in the diagnosis,” Dr. Hughes says.
A therapist can be an essential ally in this regard. So, too, can connecting with others who are also navigating the MS journey right now. Consider joining a support group for some shared understanding, and look for groups for the newly diagnosed. The National MS Society has a database of in-person and virtual support groups on its website.
“Support groups are not a substitute for evidence-based mental health treatment. However, they can be a helpful part of staying socially engaged and meeting others who are living with MS,” Dr. Hughes adds. “If you don't like support groups, no problem. Finding other sources of social support can also be a great way to cope with stress, anxiety, and depression. The National MS Society also has a Peer Support program that matches people with one-on-one support.”
Depending on your symptoms, this might also be the time to disclose your diagnosis at work. If brain fog makes it hard to remember tasks, balance issues or muscle weakness prevent you from carrying heavy objects, or blurred vision affects your ability to use a computer, you might need accommodations such as assistive devices, modified work hours, or other accessible facilities that are guaranteed under the Americans with Disabilities Act.
“When I work with patients, I often ask questions about their relationship with their boss … and whether [an MS diagnosis] is something they can share and be supported about, versus something that they’ll want to go through more of the formal process with Human Resources,” Dr. Hughes notes.
Either way, just know that you have rights. The ADA prohibits employers from discriminating against employees or applicants with disabilities in all aspects of employment including hiring, pay, promotion, firing, and more. Not sure how to ask for accommodations? Check the Job Accommodations Network Searchable Online Accommodations Resource, which provides descriptions of many different types of accommodations and language that can be helpful in making the request.
6 Months After Diagnosis
Now that your care team is established and you’ve been taking medications for a while, it’s time to settle into a new normal. This includes making additional lifestyle changes that can ease your symptoms and prevent the disease from getting worse.
Research published in the Multiple Sclerosis Journal links resistance training with increased leg and arm function and improved cognitive abilities among those with RRMS. However, there is no evidence that one exercise modality is superior to another and the most important is for you to stay active. In addition, eating a healthy diet can help control body weight and cholesterol levels, which have a positive impact on the course of the disease. Coexisting diseases such as obesity, type 2 diabetes, and cardiovascular disease—all impacted by diet and exercise—can make MS worse, Dr. Cohan says.
You might want to add a nutritionist and physical or occupational therapist to your care team to help you establish new, healthy habits. Or, recruit your loved ones for support—ask for healthy recipes, or start a walking club to make lifestyle changes more enjoyable.
Ongoing monitoring is an essential part of living with MS, too. Even when your disease is stable and your medication is controlling your symptoms, Dr. Cohan recommends that you see your neurologist every six months—and make an appointment immediately if your symptoms change. Expect routine blood testing, which should include monitoring for liver function and vitamin D levels, which could show warning signs of increased risk of relapses, and watch for possible side effects from medications. Annual MRI scans to monitor disease progression might also be a recommended part of your treatment plan.
By now, you should be seeing some improvement in your symptoms and you are free of relapse thanks to the disease-modifying drugs you were most likely prescribed early on, but Dr. Cohan notes that you may need other medications to control symptoms—especially if new challenges have popped up since your diagnosis. Remember, it's really important to stay on top of any changes in symptoms you experience. At each visit with you neurologist, talk about symptoms affecting your memory, your level of energy, your vision, your strength, your skin sensation and your balance. It is also important that you mention any issues with your bladder.
“The sooner you start medication therapy, the less likelihood you’ll experience a significant worsening of disability,” Cohan says. “If a medication isn’t working, you’ll need to talk to your neurologist about making a change.”
1 Year After Diagnosis—and Beyond
After the first year of diagnosis, your main focus will likely be on how best to manage your symptoms. After that, Dr. Cohan says, conversations often turn to what happens next, which may include starting, or even expanding, your brood. If you are, in fact, ready to consider family planning, it’s time to talk to your doctor—but only if your MS is well-controlled. Your neurologist and obstetrician/gynecologist can provide information about how MS symptoms may affect your pregnancy, whether you need to stop or switch medications, and how medications may affect breastfeeding.
Preparing for the future is a significant part of living with a chronic disease. Cognitive changes, including difficulties with processing speed and working memory are common with MS, Dr. Hughes says. Regular physical exercise—which we hope you've already incorporated by now!—appears to help protect your brain from cognitive decline, according to research published in the journal Disability and Rehabilitation, so be sure to prioritize regular workouts. Even playing computer games, reading books or magazines, studying a foreign languge, or just balancing your checkbook helps keep your mind sharp—so be sure to include daily brain "exercises," too.
You'll also want to plan for your financial future. The National MS Society established the Financial Education Partners program to provide free financial planning and education to those living with chronic conditions like MS.
As you continue navigating life with MS, which includes ongoing medical monitoring, symptom management, and potential medication changes, Dr. Cohan offers words of encouragement.
“The future prognosis is good,” he says. “There's never a good time to get MS. But, for most people who adhere to their medicines, work closely with a neurologist, and stay on top of things, we’re seeing fewer transition to progressive disease. With more tailored drugs yielding more promising results, for the majority of patients the outlook is very good.”
- RRMS: National MS Society. (n.d.). “Relapsing-Remitting MS.” nationalmssociety.org/What-is-MS/Types-of-MS/Relapsing-remitting-MS
- Americans with Disabilities Act: ada.gov (n.d.) “Information and Technical Assistance on the Americans with Disabilities Act.” ada.gov/index.html
- Job Accommodations Network Searchable Online Accommodations Resource: Job Accommodations Network. (n.d.). “Accommodation Search.” askjan.org/soar.cfm
- Resistance Traning and RRMS: Multiple Sclerosis Journal. (2018). “Can resistance training impact MRI outcomes in relapsing-remitting multiple sclerosis?” ncbi.nlm.nih.gov/PubMed/28752800
- Diet and MS: Current Nutrition Reports. (2018). “The Role of Diet in Multiple Sclerosis: Mechanistic Connections and Current Evidence.” ncbi.nlm.nih.gov/pmc/articles/PMC6132382/
- Vitamin D and MS: International Journal of MS Care. (2015). “The Role of Vitamin D in Multiple Sclerosis Pathology and Treatment.” ijmsc.org/doi/pdf/10.7224/1537-2073-17.s2.1
- Exercise and MS: Disability and Rehabilitation. (2017). “Physical activity and cognitive function in adults with multiple sclerosis: an integrative review.” ncbi.nlm.nih.gov/pubmed/27764974