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We all respond differently to information about our health. After learning you have multiple sclerosis (MS), you might be stunned, scared, or even relieved to have a new diagnosis that explains vision problems, dizziness, or other neurological symptoms. No matter what you’re feeling, you’re not alone. On MyMSTeam, thousands of others have been in your shoes.
You can’t figure out everything about MS at once, and you don’t need to. Taking small steps to adjust to your new reality can be empowering in a time of major change. According to the American Psychological Association, active coping strategies like getting organized and planning for your MS care can improve mental health and emotional well-being.
It’s normal to feel out of control when you first learn you have MS. You may have a pile of pamphlets crowding your kitchen table and a head full of questions you forget the moment you set foot in a neurologist’s office. You can begin to tame the chaos by implementing simple organizational techniques to create space for this new aspect of your life. Here are nine steps to consider as you begin your journey with MS.
Storing all your printed doctors’ visit summaries, pamphlets about MS care, and other resources in a designated spot can create some order and help you find information when you need it. You don’t need a fancy filing system — a kitchen drawer, an old binder, or simply an orderly stack on your bedside table can make a big difference. In addition to helping you keep track of important papers, controlling clutter might even boost your mood.
You can’t figure out everything about MS at once, and you don’t need to. Taking small steps to adjust to your new reality can be empowering in a time of major change.
Keep a list of questions for your health care provider in a dedicated notebook or on your smartphone. When you think of a question about early symptoms of MS, your personal prognosis (outlook), or side effects of your medications, jot it down. Bring your list to your appointments so you can remember what to ask. Plus, you’ll already have a place to write down the answers.
Make sure you ask your doctor about disease-modifying therapies (DMTs). There’s no cure for MS, but DMTs are proven to slow down disease progression and reduce the rate of relapses and the formation of new lesions. MS is a chronic autoimmune condition, and DMTs are taken long-term to help manage it. The many DMTs work in different ways, are taken on different schedules and in different forms, and have different potential side effects.
Some DMTs are taken via injection, like interferon beta 1a (Avonex and Rebif) and glatiramer acetate (Copaxone). There are also oral options, like dimethyl fumarate (Tecfidera) and fingolimod (Gilenya), as well as infusion options, like natalizumab (Tysabri) and ocrelizumab (Ocrevus). Your doctor will help you choose a treatment option that best fits your needs and will help you reach your treatment goals.
If you already rely on a digital calendar or paper planner to manage work and family obligations, stick with that method for managing your doctors’ visits. If keeping a calendar is new to you, consider using what you’ve already got at home, such as a grocery-list notepad or a piece of paper and a magnet on the fridge. You can also ask your doctor’s office about phone call or text message reminders to help you keep on top of appointments.
An old-fashioned pill organizer offers a great way to keep track of an oral medication regimen. You can also use a paper medication tracker. If you’re comfortable using a smartphone, consider downloading a medication-tracking app to manage your treatment schedule.
It can feel overwhelming to reach out after receiving an MS diagnosis, but you don’t have to face what’s ahead alone. Support from loved ones, family members, your health care team, and other people with MS is crucial as you embark on an MS treatment plan. You may need to let go of some tasks and obligations as you adjust to your new normal. Consider how you can minimize stress and overactivity in your day-to-day life. Who could you ask to help with some of your duties?
Your community on MyMSTeam can provide an ongoing emotional boost whenever you feel worried or overwhelmed about life with MS. The community is also here when you want to celebrate a victory.
You may not be ready to talk about your diagnosis with your loved ones right away. You also might not feel comfortable joining an in-person support group. That’s OK. Connecting with members on MyMSTeam can be a first step toward finding support. Your community on MyMSTeam can provide an ongoing emotional boost whenever you feel worried or overwhelmed about life with MS. The community is also here when you want to celebrate a victory. If you have a question about symptoms like unusual sensations or heat sensitivity, someone on MyMSTeam has likely experienced the same thing and may even have tips for managing it.
Many hospitals and medical practices offer resources that extend beyond your neurology appointments. These may include chaplaincy services, health education classes, patient liaisons/advocates or nurse navigators, on-site support groups, and referrals to other services and therapies. Ask your doctor or health care provider about the support and treatment options available to you. Your quality of life is important, and your health care team can help you treat MS, manage symptoms, and support mental health as you navigate life with your condition.
Sharing your MS diagnosis with friends and family can be hard. They may be afraid for you and struggle to react in a helpful way. Try to remember that everyone is doing their best with difficult news. If you’re able, let your loved ones know how they can be most helpful to you during this time, whether that’s sharing the load of household chores or offering a listening ear.
Be cautious about what you read online, especially if someone is offering a quick fix or selling a cure. Reach out to your health care provider if you have questions about something you’ve read.
You might not have known much about MS before your diagnosis, but now you probably want to learn more. The resources on MyMSTeam, as well as those from nonprofit organizations like the National Multiple Sclerosis Society, offer up-to-date information on MS treatments and symptom management. Your health care provider is also a great source of information.
You might also want to do your own research. Remember to be cautious about what you read online, especially if someone is offering a quick fix or selling a cure. Reach out to your health care provider if you have questions about something you’ve read.
By joining MyMSTeam, the social network and online community for those living with multiple sclerosis, you gain a support group of more than 206,000 people who know what it’s like to manage MS.
If you were just diagnosed with MS, what information are you seeking? For MS veterans, what do you wish you knew when you were first diagnosed? Share in the comments below or directly on your Activities page.
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When I Was Dx I Went To A Neuro Surgeon Because Of My Strange Symptoms By My Neuro.she Told Me Either A Brain Tumor Or Ms.
Chiara Rocchi, M.D.
completed medical school and neurology residency at Polytechnic Marche University in Italy.
Learn more about her here.
Alison Channon
has nearly a decade of experience writing about chronic health conditions, mental health, and women's health.
Learn more about her here.
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Sorry after the dx I cried when nobody was home and called my neuro I needed to know and said no brain tumor but lesions in my brain being ms. Had to stop working because couldn’t type and walking… read more
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