Few people are prepared to receive a diagnosis of multiple sclerosis (MS). Those who do, however, are far from alone. According to The Multiple Sclerosis Foundation, there are more than 2.5 million people living with MS around the world.
It’s normal to have a lot of questions about your new diagnosis. Getting questions answered and learning about the condition helps many people feel empowered to manage their MS.
Here are some questions to ask your doctor during your next appointment.
What symptoms will I experience?
Chances are, it was your symptoms that helped your doctor diagnosis your MS in the first place. Not everyone experiences the same symptoms, so it can be difficult to predict how your disease will progress or exactly what symptoms you will feel. Your symptoms will also depend on the location of the affected nerve fibers.
Common signs and symptoms of MS include:
- numbness or weakness, usually affecting one side of the body at a time
- painful eye movement
- vision loss or disturbances, usually in one eye
- extreme fatigue
- tingling or “prickly” sensation
- electric shock sensations, often when moving the neck
- balance issues
- dizziness or vertigo
- bowel and bladder issues
- slurred speech
While the exact course of your disease can’t be predicted, the National MS Society reports that 85 percent of people with MS have relapsing-remitting multiple sclerosis (RRMS). RRMS is characterized by a relapse of symptoms followed by a period of remission that can last months or even years. These relapses are also called exacerbations or flare-ups.
Those with primary progressive MS generally experience a worsening of symptoms over many years, with no periods of relapse. Both types of MS have similar treatment protocols.
How does MS impact life expectancy?
Most people living with MS live long, productive lives. On average, people with MS live about seven years less than the general U.S. population. Increased knowledge about overall health and preventive care is improving outcomes.
The difference in life expectancy is thought to be due to complications of severe MS, such as trouble swallowing and chest and bladder infections. With care and attention aimed at reducing these complications, they can pose less risk to individuals. Wellness plans that help reduce the risk of heart disease and stroke also contribute to longer life expectancy.
What are my treatment options?
There’s currently no cure for MS, but there are many effective medications available. Your treatment options depend in part on whether you receive a diagnosis of primary progressive or relapse-remitting MS. In either case, the three main goals for treatment are to:
- modify the disease course by slowing MS activity for longer periods of remission
- treat attacks or relapses
- manage symptoms
Ocrelizumab (Ocrevus) is an FDA-approved drug that slows the worsening of symptoms in primary progressive MS. Your doctor may also prescribe ocrelizumab if you have relapse-remitting MS. As of May 2018, ocrelizumab is the only disease-modifying therapy (DMT) available for primary progressive MS.
For relapse-remitting MS, the first line of treatment is usually several other DMTs. Since MS is an autoimmune disorder, these medications generally work on the autoimmune response in order to decrease the frequency and severity of relapses. Some DMTs are given by a medical professional through an intravenous infusion, while others are given by injection at home. Beta interferons are commonly prescribed to reduce relapse risk. These are administered by injection under the skin.
In addition to managing progression, many people living with MS take medications to handle symptoms that occur during an attack or relapse. Many attacks resolve without extra treatment, but if they are severe, your doctor may prescribe a corticosteroid such as prednisone. Corticosteroids can help reduce inflammation quickly.
Your symptoms will vary and need to be treated individually. Your medications will depend on the symptoms you’re experiencing and will be balanced against the risk of side effects. There are several oral and topical medication options available for each symptom, such as pain, stiffness, and spasms. Treatments are also available to manage other symptoms associated with MS, including anxiety, depression, and bladder or bowel issues.
Other therapies, such as rehabilitation, may be recommended alongside medication.
What are the side effects of treatment?
Many MS medications come with risks. Ocrelizumab, for example, may increase the risk for some types of cancer. Mitoxantrone is typically only used for advanced MS because of its link to blood cancers and potential to damage heart health. Alemtuzumab (Lemtrada) increases the risk of infections and developing another autoimmune disorder.
Most MS medications have relatively minor side effects, such as flu-like symptoms and irritation at the injection site. Because your experience with MS is unique to you, your doctor should discuss the potential benefits of treatment, taking into account the side effects of medication.
How can I connect with others living with MS?
Fostering connections between people living with MS is part of the goal of the National MS Society. The organization has developed a virtual network where people can learn and share experiences. You can learn more by visiting the NMSS website.
Your doctor or nurse may also have local resources where you can meet others in the MS community. You can also search by zip code on the NMSS website for groups near you. While some people prefer to connect online, others want to have in-person conversations about what MS has meant for them.
What else can I do to manage my MS?
Making healthier lifestyle choices may help you manage your MS symptoms. Studies have found that people with MS who exercise have improved strength and endurance, along with better bladder and bowel function. Exercise has also been found to improve mood and energy levels. Ask your doctor for a referral to a physical therapist that has experience working with people who have MS.
A healthy diet can improve energy levels and help you maintain a healthy weight. There isn’t a specific MS diet, but a low-fat and high-fiber diet is recommended. Small studies have suggested that adding omega-3 fatty acids and vitamin D may be beneficial for MS, but more research is needed. A nutritionist experienced in MS can help you choose the right foods for optimal health.
Quitting smoking and limiting alcohol intake has also been found to be beneficial to those with MS.
Increased awareness, research, and advocacy have significantly improved the outlook for people living with MS. Although no one can predict the course your disease will take, MS can be managed through proper treatment and a healthy lifestyle. Reach out to members of the MS community to get support. Speak openly with your doctor about your concerns, and work together to create a plan that best suits your needs.