Multiple Sclerosis: Frequently asked questions

Experiencing the first signs and symptoms of multiple sclerosis (MS) can be alarming. Daniel P. Kurz, Jr., MD is a board-certified neurologist at UChicago Medicine and an expert in MS, along with other disorders that impact the nervous system. Below, he answers common questions about the illness and provides a look into the future of MS research.

What is MS?

Multiple sclerosis, or MS, is an autoimmune illness. This means the immune system is reacting against the body. The immune system really aims to protect us against infections, but in some cases, it ends up attacking the body and causing harm. Specifically, with MS, the immune system is attacking the brain, spinal cord, and in a lot of cases, the optic nerves which transmit visual signals from the eyes to the brain.

What causes MS?

We’re still researching what causes MS, but we do know there are risk factors that may increase a person’s chance of getting it. Some of these are low vitamin D levels, and more than two hundred gene variant risk factors that have been identified. More recently, we’ve been looking into a history of viral illness (like the Epstein-Barr Virus) that may increase the chance a person will develop signs and symptoms of MS.

What are signs and symptoms of MS?

People can have varying symptoms of MS, but a lot of what we see includes problems with vision, pain with eye movement and difficulty with color of vision in one or both eyes (often the color red). This is what we call optic neuritis.

We also see people with facial numbness, difficulty speaking, swallowing, arm or leg numbness or weakness, difficulty controlling the bladder (frequent urination, or difficulty getting urine started) and extremity numbness and weakness that can lead to problems with walking.

Memory and concentration can also be impaired, which we think could be from inflammation of the immune system or fatigue.

Who is affected by MS?

MS is over two times more common in women, and we tend to see the immune system act up more commonly in patients in their 20s through 40s. But we can make a diagnosis in any age group and treat pediatric patients through aging adults.

How is MS diagnosed?

Patients often come to see us at UChicago Medicine after being seen by a primary care provider or general neurologist, describing the signs and symptoms of MS. Our workup includes magnetic resonance imaging (MRI) of the brain and spine. This allows us to look for typical features like lesions or hyperintensities (signs of inflammation).

We often do blood tests to rule out other possible explanations of the neurological signs and symptoms. Some patients have a spinal tap, which involves taking a sample of fluid that surrounds the brain and spine and checking it for inflammation. Not every patient needs this, but sometimes it’s helpful for diagnostic purposes.

There’s no single diagnostic test that says with 100% certainty that a person has or does not have MS. During the office visit, we put together the clinical history and other test results to make a diagnosis and begin developing a care plan tailored to the patient’s illness.

What is an MS relapse?

When a patient develops neurological symptoms that are different from their past symptoms, and those symptoms last at least 24 hours, this is what we call a relapse.

We get worried that they may have a new area of the brain or spine that is being impacted by inflammation. If the patient is already on an MS medication, it could indicate the medication is not working or is not the optimal choice for that person. Although we’re doing a lot of research, we don’t have a cure yet. There’s no medicine that 100% can put a stop to a person’s risk of having a relapse. During follow-up care visits, we’re constantly assessing for new symptoms or new spots on the MRI, regardless of symptoms.

How do I choose a treatment for MS/what kind of treatments are available?

There are numerous treatments available right now, as well as new ones on the horizon, which is one of the exciting things about working as an MS doctor.

There’s no single best treatment for every patient. We take many things into consideration, like a person’s background medical problems, along with their own treatment philosophy. Working together, we choose the MS medication we hope will reduce risk of relapses and disability as well as align best with the patient’s healthcare philosophy.

Because MS comes from the immune system, our treatments aim for immunosuppression. Our goal is to stop the immune system from causing harm. This also means patients may be at an increased risk for other infections.

We have injections, pills and infusions. Each medication option has different benefits, risks and side effects. We go through all of this information with patients to figure out which works best. We see the patient at regular intervals in the office. They receive repeat MRIs, and we check to make sure there are no new lesions.

If a patient has new relapses or MRI changes, then we would talk about changing their medication. Ultimately, we strive for the treatment plan to minimize neurological symptoms that impact daily functioning and a person’s ability to live their life to the fullest.

Are there non-medication treatments for MS?

In addition to medications, we’ve seen great benefit to patients from non-medication interventions: specifically, vitamin D.

Another thing we encourage is for people to quit smoking. There is an association between smokers who have MS and brain shrinking.

We also encourage routine physical activity, general wellness, sleep and healthy diet. All of that contributes to wellness and better outcomes for MS patients.

MS is a challenging diagnosis—it’s a chronic illness with no cure. We talk about the impact on a patient’s mental health, and we have a lot of ways to support people. We offer resources from the National MS Society, personalized education in our clinic, mental health and wellness resources, psychology, psychiatry and social worker support.

I’m always impressed by the MS community’s ability to support each other. We often learn things from patients in the MS community—they teach me as much as I teach them.

Will MS cause me to need a wheelchair?

A lot of patients ask: “Am I going to be in a wheelchair?”

We’ve made a lot of progress on treating MS. We have a much greater ability than in the past to prevent patients from worsening over time. I am very hopeful we can slow down disease activity over time and am excited about new therapeutic options that work to reduce patients’ needs for assistive devices like walking aids and wheelchairs.

How do I tell my loved ones about my MS?

We invite patients to bring friends and family to their doctor’s visits to both learn about their illness and provide support.

There are also excellent resources at the National MS Society on how to talk about the diagnosis with children.

Are my children at risk?

We do think there is a mild increased risk in first-degree relatives. This risk increases if the relative is a woman, since women are more likely to develop MS than men.

Do I have to stay on MS medication forever?

This is an area of active research. We have observed that the immune system becomes less robust over time, which means a person with MS will be less affected by their immune system attacking the body. So, we often consider taking patients off MS medications later in life.

Can I have children if I have MS?

MS does not prevent people from having children and building families.

My job is to work with patients to make sure they can achieve all their life aspirations without MS getting in the way.

I often tell patients that MS is there, but it doesn’t always have to be in the foreground. We’ll work to keep the MS stable so it doesn’t have to be the main event.

What does the state of MS research look like right now?

Right now, we’re working on inclusivity in MS research. Historically, we have not had enough representation of diversity in clinical trials. At UChicago Medicine, it’s a priority to see our patient populations represented in clinical trials so results adequately reflect the patients that we treat. For example, if I counsel a patient who is Black about a clinical trial that only had 5% Black participants, I need to explain that limitation. My colleagues and I are working actively to lessen those limitations as best we can.

Learn more about MS treatment at UChicago Medicine.