Multiple sclerosis (MS) is an unpredictable disease that affects each person differently. Adjusting to your new and ever-changing situation may be easier if you have an idea of what to expect.
Follow this guide for what to expect after getting a diagnosis of MS.
Being newly diagnosed with MS can be scary. Your next steps will depend on the activity level of your disease and what treatment you might need.
There are four types of MS:
- clinically isolated syndrome (CIS)
- relapsing-remitting MS
- secondary progressive MS
- primary progressive MS
Begin by speaking with your doctor to understand what type you have, and then educate yourself with information from reputable medical websites like the National Multiple Sclerosis Society or the Multiple Sclerosis Association of America.
Here are some additional factors to consider after your diagnosis:
What symptoms can I expect?
It’s important to face your diagnosis head-on and learn as much as you can about the disease and the symptoms.
The unknown can be scary, so having an idea of what symptoms you may experience can help you be better prepared for them.
Not everyone will have the same symptoms, but some symptoms are
- numbness or weakness, usually affecting one side of your body at a time
- pain when moving your eyes
- loss or disturbance of vision, usually in one eye at a time
- tingling
- pain
- tremors
- balance problems
- fatigue
- dizziness or vertigo
- bladder and bowel issues
Expect some relapses of symptoms. Approximately 85% of Americans with MS are diagnosed with relapsing-remitting MS (RRMS), per the National Multiple Sclerosis Society. The condition is characterized by attacks with full or partial recovery.
About 10-15% of Americans with MS don’t have attacks. Instead, they experience a slow progression of the disease. This is called primary-progressive MS (PPMS).
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.
What is the best treatment plan for me?
Having a treatment plan in place can help you manage your disease and help alleviate the potential feeling that the disease is dictating your life.
The Multiple Sclerosis Society recommends taking a comprehensive treatment approach. This means:
- modifying the disease course by taking FDA-approved medications to help reduce the frequency and severity of attacks
- treating attacks, which often involves using corticosteroids to reduce inflammation and limit damage to the central nervous system (CNS)
- managing symptoms using different medications and therapies
- taking part in rehabilitation programs to help maintain your independence and continue your at-home activities and work in a way that’s both safe and appropriate to your changing needs
- seeking professional emotional support to help you cope with your new diagnosis and any emotional changes you may experience, like anxiety or depression
You can work with your healthcare team to create a plan specific to your needs. This plan should include referrals to specialists who can help you with different aspects of the disease and available treatments.
Having confidence in your healthcare team can have a positive impact on the way you deal with your changing life.
Keeping track of your disease — by writing down appointments and medications as well as keeping a journal of your symptoms — can also be helpful for you and your care team.
This is also a great way to keep track of your concerns and questions so you’re better prepared for your appointments.
Although a diagnosis of MS may initially be shocking, it’s important not to delay treatment. A 2023 study found that beginning treatment as early as possible may slow your disease progression.
How will my MS affect my life?
Though the symptoms of MS can be challenging, it’s important to note that with treatment and support, many people with MS continue to live active and productive lives.
Depending on your symptoms, you may need to make some adjustments to the way you go about your daily activities.
Consistency and community are important in helping you continue living your life as close to what you’re typically accustomed to. That means working toward not isolating yourself or stopping doing the things you enjoy.
Being active can play a big role in managing MS. It can help reduce your symptoms and help you nurture an encouraging outlook.
A physical or occupational therapist can give you suggestions on how to adapt your activities at home and work to suit your needs.
Being able to continue doing the things you love in a way that’s safe and comfortable can make it much easier for to adjust to living with MS.
Your initial reaction to your diagnosis might be to think of the worst-case scenario, but as much as you can, try to remain calm and avoid focusing on things that you cannot control or that you do not yet have enough information about.
It’s common for MS to negatively affect your mental health. As many as 50% of people with MS experience a depressive episode during their life. Anxiety is also very common.
The following activities can help you develop and nurture resilience to support your mental well-being:
- practicing mindfulness
- meditation or yoga
- getting counseling
- exercising, if you can
- engaging in hobbies or distracting activities
In addition, having support from other people and healthcare professionals who understand the challenges of living with MS can help you manage negative feelings related to your condition.
You can look online for local support groups in your area. In addition, you can connect with others living with the disease in Healthline’s own Bezzy MS community.
How quickly does MS progress?
How quickly MS progresses depends on the type of MS you have. According to the Multiple Sclerosis Association of America, about 80–85% of people are initially diagnosed with RRMS, which means that for a while, your symptoms may come and go. About half of these people will progress to SPMS within a decade.
On the other hand, if you’re one of the 10–15% of people diagnosed initially with PPMS, your symptoms will more likely worsen immediately with no periods of remission in between. About 5% of people will develop PRMS initially, which is also progressive but may include periods when the symptoms are worse.
Could you live a normal life with MS?
While this can depend on the specific type of MS you have and the severity of your symptoms, with the right medical and psychological support, you can continue enjoying your typical life with an MS diagnosis.
How long do you live after being diagnosed with MS?
Living with MS can be challenging, but it’s not a fatal disease. That said, research suggests MS can shorten your life span by about 7 years due to complications or other underlying medical conditions. Proper symptom management and support can help reduce the chance of such complications.
MS is a complex disease that manifests differently in everyone. Accepting that your symptoms and experience will evolve may feel more manageable if you know and understand what to expect.
Speaking with your doctor and doing research can be helpful initial steps. It’s also beneficial to surround yourself with supportive people and to engage in activities that give you a different focus as you begin your treatment to help nurture your mental well-being.