Newly diagnosed with MS: What’s next?
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Learning you have multiple sclerosis (MS) can turn your world upside down. It can feel overwhelming and you may have many questions about what to do next.
Once you have allowed yourself some time to come to terms with your MS diagnosis, it’s time to focus on adjusting to your new reality. When you are ready, you can start educating yourself about MS, including about the disease itself, how it is treated, and who can help you.
More specifically, you can learn about living with MS, building a healthcare team, making decisions about treatment approaches, and financial resources for MS patients and their families. You can also educate yourself about MS coping strategies to improve your mental health, empower yourself, and live life to the fullest.
You’ll also discover you are not alone: MS affects more than 2.8 million people worldwide. There are ways to connect with people who have the disease, along with receiving support and information from experts, MS organizations, and researchers seeking new treatments and a hoped-for eventual cure.
Talking to your neurologist
MS is a neurological disorder that can lead to impaired nerve function in the brain and spinal cord due to a malfunction in the immune system. Multiple risk factors can contribute to the development and progression of MS. It is believed that both genetic and environmental factors play a role in the causes of MS.
Because MS can be mistaken for a number of other chronic and debilitating diseases that affect the central nervous system — and there are no specific tests for it — it may take years to receive a diagnosis.
The neurologist making the diagnosis may use clinical assessment tests such as magnetic resonance imaging (MRI), a spinal tap, vision tests, and an evoked potential test, which measures the electrical activity of your brain in response to a stimulus — such as sight or sound — by placing electrodes on specific parts of your body.
The neurologist will also rule out other disorders that have similar symptoms, such as central nervous system infections, a brain tumor, other autoimmune diseases, and other demyelinating diseases (disorders that damage the myelin sheath that protects nerve cells), including neuromyelitis optica spectrum disorder and acute disseminated encephalomyelitis.
The neurologist will also try to determine which type of MS you have based on your symptoms and other signs.
There are four main MS types — clinically isolated syndrome, relapsing-remitting MS, secondary progressive MS, and primary progressive MS. There are also rarer MS subtypes and MS-like disease, each identified by its clinical presentation and MS symptoms. About 85% of all newly diagnosed cases are the relapsing-remitting form of MS.
Once you have a diagnosis, your neurologist will come up with a treatment plan based on your health condition, disease type, symptoms, needs, and personal preferences.
Don’t be afraid to ask questions. You should ensure that you have a full understanding of your diagnosis and what it means for you as the patient, as well as what the next steps are in your treatment and management plan.
At any point, you can get a second opinion. Ideally, find a medical professional who is not connected to the team of healthcare specialists who made the initial diagnosis. You can ask your primary care provider (PCP) for another referral.
Accepting your diagnosis
A mix of emotions including shock can make it hard for you to take in all the information you are being given about your new MS diagnosis. You may also find it hard to stop thinking, “Why me?”
Accepting your new reality can be hard. You may experience complex emotions of fear, denial, and grief, which can lead to other mental health issues, including depression and anxiety. Living with MS can affect many aspects of your daily life, including health, wellness, relationships, and career.
But facing your diagnosis head-on can help you move forward. Because MS is a chronic disorder, it is important to take care of your physical and mental health and monitor your symptoms, follow your medical treatments, and make any lifestyle changes as needed.
Asking for help and talking with family, friends, and others may help you feel less overwhelmed, as well as relieve anxiety and uncertainty.
Still, telling people about your diagnosis may be difficult. Your doctor, advocates from an MS organization, or an MS support group may be able to give you advice about what you need and how to discuss it.
Educating yourself
Learning about the type of MS you have, how to manage your symptoms, including what does and doesn’t worsen your condition, and available resources can be a powerful way to educate yourself and learn to live with MS.
Begin by understanding the condition itself. MS disease progression is caused by your body’s immune system starting an inflammatory attack on your neurological system, resulting in a loss of an insulating cover — called the myelin sheath — around nerve fibers. This leads to impaired nerve function in your brain or spinal cord.
Your MS will most likely fall into one of the four main types:
- Clinically isolated syndrome is defined as a first attack of MS-like symptoms lasting at least 24 hours and not attributed to fever or infections. After the first episode, symptoms tend to disappear partially or completely.
- Relapsing-remitting MS is the most common form of the disease. It is characterized by a person having symptoms (or relapses), followed by periods of partial or complete recovery from symptoms (remissions).
- Secondary progressive MS is a disease stage that follows relapsing-remitting MS. It’s believed that if the disease is left untreated, about 50% of people would transition to secondary progressive MS within a decade, and 90% within 25 years.
- Primary progressive MS occurs in about 15% of people with MS, with symptoms that progressively worsen over time without periods of relapse and remission.
Keep in mind that not every person with MS is affected in the same way. Your symptoms depend on which areas of your nervous system are most affected. Most people will find their symptoms worsen over time.
Your MS healthcare team will monitor your symptoms and start you on a personal course of treatment. Begin your treatments as soon as you can to help improve long-term clinical outcomes and your overall well-being.
Your healthcare team can provide information on:
- symptom management
- lifestyle changes, including exercise and diet
- physiotherapy and occupational therapy
- speech and language therapy
- mental health therapy
- community resources and MS organizations
- research into the disease and upcoming treatments.
Multiple Sclerosis News Today offers the latest news and research about MS, informational pages about the disease, and life stories and first-hand perspectives from people living with MS.
Deciding on a treatment approach
Although there isn’t any treatment that can cure MS, research has led to major advances in therapies and treatment strategies. A number of treatment options are available, especially for relapsing-remitting MS.
Your healthcare providers will discuss a personal treatment plan that should help manage your MS symptoms and disease progression.
Treatment options for MS fall into three categories: disease-modifying therapies, relapse management medications, and treatments for symptoms.
MS treatments that can change the course of the disease are called disease-modifying therapies (DMT), with medications available by injection, infusion, and orally. Your healthcare team may choose to start with a moderately effective DMT that has a well-established safety profile, or they may decide to start with a highly effective DMT if your MS is believed to be more aggressive.
Relapse management therapies treat MS flare-ups, also known as MS attacks, with the goal of stopping the relapse and promoting recovery. This can include the use of:
- corticosteroids that mimic a naturally occurring glucocorticoid hormone called cortisol and reduce inflammation of the central nervous system.
- medications containing a purified form of the adrenocorticotropic hormone that reduce inflammation and accelerate relapse recovery by stimulating the production of cortisol and other adrenocortical hormones.
- plasmapheresis, which removes and then replaces a person’s plasma — the liquid portion of blood — to eliminate antibodies and other proteins that could be contributing to MS-related inflammation.
Symptomatic treatments help control common MS symptoms, such as fatigue, chronic pain, muscle stiffness and involuntary spasms (spasticity), your ability to walk and move, bladder and bowel problems, sexual dysfunction, and your mental health.
Your healthcare team will discuss starting, changing, and stopping treatment, depending on what’s needed at the time. They can tell you about alternative and complementary treatments. These strategies may include making lifestyle changes such as exercising more and changing your diet. If you smoke or drink, you may be told to stop.
Researchers also are investigating experimental treatments for MS that may provide new ways to treat symptoms or target the underlying cause of the disease.
In addition to helping you manage your physical symptoms, your healthcare team can also connect you with mental health therapists to address mood changes and other mental health issues associated with MS.
Putting together a care team
On the medical side, your healthcare team should include your neurologist and your PCP, along with any other healthcare professionals you see regularly.
Generally you will see your neurologist annually, unless you are experiencing MS-related changes or your current treatment requires attention. Communication is key, especially if your medication has side effects that are making you feel worse. Your doctor should be able to offer other options for treating relapses and other symptoms.
Other healthcare professionals involved in your treatment may include:
- dietitian: to improve your nutrition and advise on making meals easier to swallow
- neuro-ophthalmologist: to treat vision problems related to the nervous system
- occupational therapist: to help with getting around in your home or other places such as work or school
- physiotherapist: to improve balance and movement
- psychologist or mental health counselor: to treat mental health issues
- speech and language therapist: to help with communication, and if you develop swallowing difficulties
- urologist: to treat bladder problems
You should also think about your future healthcare needs for when you get older or your MS worsens. You may be able to rely on family and friends or, at some point, need to hire healthcare aides.
Do some advance planning by researching long-term care options, such as an assisted living facility or a personal care home, where the staff are trained in caring for people who have complex healthcare needs.
Finances and insurance
You may be concerned about the cost of healthcare treatment being a heavy burden on you and your family. Options are available to help relieve some of your financial worries.
First, review your finances. You may need a financial planner to understand the overall picture of your income and your expenses, debt such as a mortgage, and whether you qualify for financial assistance from government and charitable sources.
In the U.S., Medicare provides health insurance for people over the age of 65 and for anyone who has received disability insurance benefits — including insurance and income — from the Social Security Administration for at least 24 months, no matter your age.
Medicare offers financial assistance for people living with MS as follows:
- Medicare part A offers assistance in paying for hospital admissions.
- Medicare part B requires paying an additional cost, but it covers doctor’s appointments, screening, and tests for MS, and rehabilitation services.
- Medicare part D assists with prescriptions bought at a pharmacy.
Private health insurance plans may cover some or all of the cost for medical services, prescriptions, and medical supplies. Your employer may offer health insurance, or you can purchase an individual MS insurance plan through companies listed on the Health Insurance Marketplace.
The U.S. Department of Veterans Affairs provides healthcare services to active service members and veterans who have MS, including financial coverage and cost sharing plans.
There are nonprofit organizations in the U.S. that can help with financial copay assistance for MS medications, including:
To find other financial assistance outlets in your state or area, search:
- Benefits.gov
- FindHelp.org
- Eldercare Locator
- NeedHelpPayingBills.com
- Patient Advocate Foundation National Financial Resource Directory
Support and resources
Living with MS can affect your mental health, causing anxiety and depression. It can also make you feel lonely and isolated, especially if your symptoms interfere with your daily activities and social interactions.
Start by speaking with your healthcare team about mental health counseling that is available in your community, as well as any in-person and online support groups.
Talking with other people who have MS, caregivers, or healthcare experts can help you make social connections and provide a sense of community. Being part of an MS support group allows you to talk about your symptoms and to learn from others about management strategies including complementary treatments, assistive devices, nutrition, and exercise.
The MS International Federation works to improve access to treatment, make positive changes to healthcare policies, and promote research. It offers links to many organizations around the globe, many of which run local and online support groups.
The online forums at Multiple Sclerosis News Today are another place to discuss everything, including life with MS, treatments, assistive devices, and drug trials and research.
In the U.S., the National Multiple Sclerosis Society lists resources and supports for people living with the condition, offers the services of MS navigators, a library and education programs, along with connections to healthcare providers, and state-by-state services and supports.
The Multiple Sclerosis Association of America hosts the My MSAA Community online forum, as well as a live chat and toll-free helpline.
Online and in-person support services are also available through:
Advocacy
Once you feel more in control of your MS, you might wish to give back to the MS community as a mentor or as an advocate with MS-related organizations or charities. You could get involved by becoming a speaker at events, taking part in educational events, or trying to change public health policy.
There are opportunities to be a peer counselor in MS patient advocacy groups where you can offer support and guidance based on your lived experiences with MS.
MS advocacy efforts may focus on increasing access to timely and affordable care, funding research, or engaging healthcare professionals in discussions about ways to improve care, among other issues.
Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
FAQs about after an MS diagnosis
Support starts with your healthcare team, who provide and modify treatment for multiple sclerosis (MS) and its symptoms. They may be able to connect you to community resources for peer counseling, mental health counseling, and financial support. They may also tell you about the latest in MS news and research.International MS charities and organizations offer online and in-person support groups. Many of them have MS navigators who can answer your questions.
There are reasons you may want a second opinion. Multiple sclerosis (MS) can be mistaken for a number of other chronic and debilitating diseases that affect the central nervous system, which a neurologist must rule out before making a diagnosis. Also, there isn’t one specific test for MS. Instead, neurologists rely on clinical assessment tests such as magnetic resonance imaging (MRI), spinal tap, vision tests, and an evoked potential test. For peace of mind, you can always ask for a second opinion. Find a medical professional who is not connected to the first team of healthcare specialists who made the initial diagnosis.
Multiple sclerosis (MS) treatment falls into three categories: disease-modifying therapies, relapse management therapies, and those treating symptoms. Disease-modifying therapies are medications that can change the course of the disease. Relapse management medications treat MS flare-ups and promote recovery. MS symptom treatment is aimed at controlling common MS symptoms, such as fatigue, chronic pain, muscle stiffness and involuntary spasms (spasticity), the ability to walk and move, bladder and bowel problems, sexual dysfunction, and mental health.
You can get health insurance for multiple sclerosis (MS) treatment and care in the U.S. at the federal and state levels by buying it through private or workplace insurance plans, or through the Department of Veterans Affairs.
Maintaining your physical health after a diagnosis of multiple sclerosis (MS) may mean changing your diet by eating more nutritious foods and doing gentle exercises. It also helps to stop smoking tobacco and drinking alcohol, as both can worsen MS symptoms. MS can also affect the part of the brain that controls emotions, so you may want to consider psychological counseling. MS support groups and connecting with family and friends is another way to boost your mental health.
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