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5 Ways to Take Control After Being Diagnosed With MS

5 Ways to Take Control After Being Diagnosed With MS

These steps will help you feel confident and prepared when faced with this unpredictable condition.

A multiple sclerosis (MS) diagnosis can be overwhelming. Alternatively, it may come as a relief to finally get a definitive diagnosis and understand what’s causing your symptoms. But however you handle the news, the diagnosis can come with a great amount of uncertainty. How will the disease progress? Will it go into remission, and for how long? How will it respond to treatment?

While this uncertainty is unavoidable, there are still steps you can take to feel in control. If you or a loved one has been diagnosed with MS, here is what you need to do in the coming days, weeks and months.

Listen to your healthcare providers
While there is no cure for MS there are ways to treat the disease and manage the numerous symptoms that can result from having MS—and it is important to take an active role in your treatment. Treating MS will involve working with a number of healthcare providers. These include a neurologist, who will monitor disease progression and decide on a treatment—corticosteroids may be used to treat relapses, while disease-modifying therapies (commonly referred to as DMTs) may be prescribed to reduce MS activity and disease progression.

Many patients find physical or occupational rehabilitation helps them improve or maintain their ability to exercise and perform everyday activities safely and effectively. Psychologists, psychiatrists or counselors can help you deal with the emotional and mental challenges of the diagnosis. You will also work with your primary care physician to monitor your overall health and address symptoms or other health conditions that can result from MS.

Decide how to share your diagnosis
Deciding who, what, when where and how to tell the people in your life about your diagnosis can be a tough decision. In the early stages of your diagnosis, many patients may want to limit who they tell, until they and those closest to them have had a chance to process the news. Others may find it cathartic to talk about the illness. However, it is important to remember that once the information is out there, you cannot take it back. Consider if you want to share this information on social media. Also consider if you are ready to tell your employers—unless you need to request an immediate accommodation or symptoms are interfering with your work, you may want to take your time to research your rights and your options, since a chronic illness can affect your career.

When you do share your MS diagnosis with loved ones, you may find yourself needing to comfort and reassure them that you are OK and getting good care. This can feel challenging, especially if you were expecting for them to be comforting you. The best way to handle this is by being prepared.

Get help with the paperwork
In addition to working with healthcare providers, you should consider the other resources available to you, such as social workers and organizations that advocate for patients with MS. Being diagnosed with a chronic condition involves a lot of paperwork and coordinating of resources, including medical bills, insurance claims, your rights as an employee, diagnostic reports, medications and modifications to your home.

Join a support group
It can help to talk to other people who have MS, and there are many ways to get in contact with other people who have the condition. Ask your healthcare providers for recommendations about local support groups. Organizations like the National MS Society also provide information about support groups. There are also many options for online support groups.

Educate yourself about MS
Understanding MS can help you feel more in control. Take the time to learn about how MS affects the body, how treatments work, what’s on the horizon in MS research and what other patients have experienced.

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