Newly Diagnosed With MS: 12 Questions to Ask Your Doctor

Learning you have multiple sclerosis (MS) can be shocking and confusing. You know you need more information — a lot of it — but you aren’t sure where to start or what questions to ask.

Asking your healthcare provider the right questions can be a good first step toward successfully navigating your new life with MS.

“[Doctors] become a character in each patient’s story, and we will impact how that story unfolds from that moment. This is a responsibility, but also a privilege and an opportunity,” said Annie Brewster, MD, a practicing internist at Massachusetts General Hospital in Boston who also has MS. “I now clearly understand that a doctor’s job is not simply to diagnose and ‘manage’ diseases, but rather to partner with patients in the ongoing journey of navigating illness.”

While the disease course is different for each person, here is a guide that can help you cut through the fog and get to the heart of your MS diagnosis.

Neurologists are qualified to make an MS diagnosis; however, not all neurologists specialize in MS.

Ed Tobias, a Multiple Sclerosis News Today columnist and forum moderator, said it is important for MS patients to have an MS specialist.

“In my experience in dealing with other people with MS, I hear all the time that general neurologists just don’t understand the disease and that you’ll get a much better result if you go to a specialist,” said Tobias, 73, a retired Florida resident who was diagnosed with relapsing-remitting MS in 1980, which has since transitioned to secondary progressive MS. “It’s hard to find them, especially outside of metropolitan areas, and that’s a problem.”

Desiree Lama, a community collaborator for Multiple Sclerosis News Today, was in her senior year of high school when she was diagnosed in 2016 with relapsing-remitting MS. “When I was diagnosed, we were looking for a specialist because I got referred to a neurologist who didn’t really tell me anything,” said Lama, 23, of Texas. “He was, like, ‘Go and research MS and come back.’ And I was confused because I was young and really didn’t know what it was.”

Although her family “lucked out” and found a specialist, Lama said that what is most important is that the neurologist has experience with MS diagnoses.

Allen Bowling, MD, PhD, is an internationally recognized neurologist and integrative medicine pioneer with more than three decades of clinical and research experience. He has devoted his career to the care and treatment of people with MS.

He said that while the question about MS specialty is “good,” especially for those who live in rural areas, the fact is most MS patients are cared for by a general neurologist. “If it’s a three-hour drive, I’m not sure a patient needs to see a specialist on an ongoing basis,” said Bowling, who leads the NeuroHealth Institute in Englewood, Colorado, and is a clinical professor of neurology at the University of Colorado.

Your primary care provider may be able to provide you with a referral to an MS specialist. Ultimately, your neurologist should be someone who has the expertise to help you manage and treat your disease, communicates well, and makes you feel comfortable and heard.

Magnetic resonance imaging, or MRI, is used to help diagnose MS and to monitor and track the disease’s progression, which can aid in making treatment decisions.

MS is characterized by brain lesions, which are areas in the central nervous system that have been damaged due to MS attacks. On MRI scans, they show up as spots. Neurologists can analyze specific MRI scans to determine the number of lesions, their size and shape, and whether they are active or inactive.

MRIs can also be used to measure the degree and rate of brain volume loss in MS patients, which can help predict disease course and progression. Evidence shows that brain volume loss in MS appears to correlate with long-term physical and cognitive disability.

Rates of brain volume loss can also aid in making treatment decisions. In fact, one of the goals of several disease-modifying therapies is to slow down brain volume loss or brain atrophy.

Understanding your MRI results is important. Your neurologist should take the time to explain your MRI reports and what they mean for you as the patient.

“Someone could ask, ‘How many lesions do I have, and can I look at my MRI?’ That might make things more real to them,” Bowling said. “If someone is told they have five lesions and they can see these five small spots, that can be sort of reassuring. Or if the doctor says you have 20 lesions that are quite large and we need to push hard on treatment, viewing the MRI can back that up.”

Arelis Castillo, 30, is a community collaborator for Multiple Sclerosis News Today. A Connecticut resident, Castillo was diagnosed with relapsing-remitting MS in 2018. She said that, following her MS diagnosis, it was important to her to understand the information she had come across while doing her own research about the disease.

“I went to my doctor and said, ‘Explain lesions, where they are, and how they’re going to affect me.’ It’s highly important just to understand it,” she said.

Bowling said patients should be mindful, however, that MRI results are limited in terms of what they might mean for them in their daily lives. Symptoms may progress without the appearance of new lesions; conversely, new lesions don’t always correlate with new symptoms.

“There isn’t a real great correlation between results and quality of life,” he said.

Also known as a relapse or flare-up, an exacerbation in MS is the occurrence of new symptoms or the worsening of existing symptoms. Because MS and its symptoms are so variable, it may be difficult to determine whether something you are experiencing is a result of your disease or something different.

“[This] question is a good way to get a read on a neurologist,” Bowling said. “If they hedge or don’t get back with me that day, that’s concerning.”

Open communication with your neurologist about anything new or different you are experiencing can help them determine if your disease is progressing or if you are having a relapse, as well as assist them in making treatment decisions.

Said Lama: “Whenever I think I’m experiencing something new, I’ll Google it to see if it’s something else or an MS symptom, and then I’ll reach out to my MS specialist, and if I feel like it’s completely necessary to go see her, I’ll schedule an appointment so we can talk about it.”

Keeping track of your symptoms may also help you and your neurologist identify any possible triggers that may cause an exacerbation. These can include stress, heat, smoking, fatigue, and infection, among others.

With a number of approved MS-modifying medications now available, it’s the duty of the neurologist to narrow those options down to the two or three that are most reasonable for the patient, Bowling said.

Treatment plans should be discussed between healthcare providers and patients, and they should take into account the patient’s preferences, symptoms, their physical and cognitive function, and MS type, as well as clinical factors such as disease severity (how active it is), MRI data, and the rate and degree of brain volume loss.

“If only one option is presented, that’s concerning,” Bowling said, adding that patients should ask about potential side effects.

Castillo said, “These are valid questions about treatment because you really want to get on the right one, for whatever stage you start off with.”

When Roberts was diagnosed, her neurologist explained her disease stage and ultimately presented her with three MS treatment options, plus their top choice. They also delved into the efficacy, intensity, and possible side effects of each treatment. “It came down to, which one do you think is best, and what can I expect from it?” she said.

In addition to medications, other strategies may help MS patients manage their symptoms and feel their best. Bowling refers to this as “integrative medicine,” a combination of conventional and non-pharmaceutical approaches and lifestyle practices such as diet, exercise, physical therapy, and coping strategies for stress, anxiety, and depression.

“I think much of the time spent in MS clinics is devoted to disease-modifying treatments, and very little time is spent on treating specific symptoms,” Bowling said. “So, it’s worth asking about medication and non-medication approaches to managing symptoms.”

“It’s a very important question,” Castillo said. “I always look at things as like a balance. I’m dealing with the [disease-modifying treatment] side of it, but what are other things you can do? Exercise, different workouts, meditation, yoga … it’s important to highlight these as well because that’s also dealing with symptoms.”

Brewster said, “In truth, making healthy lifestyle choices will improve life overall, not just MS.”

Because each patient will have a different disease experience, their treatment will also be unique. This is because the disorder can affect different parts of the central nervous system and cause a broad range of symptoms with varying severity. Also playing a role in this variability are the different types of MS.

MRI results may be used on an ongoing basis to determine whether or not the chosen therapy is effective. If brain volume loss progresses significantly, it could be an indicator the therapy is not working. Likewise, significant rates of decline in cognition or physical abilities may also be a determining factor in a therapy’s effectiveness.

Bowling said a more specific question could be, “How will I know if my medication is working or not?”

Patients may not be able to follow a treatment regimen for several reasons. For example, the method of administration — which can include injectables or oral medications — may no longer be tolerated. Or perhaps the side effects of a particular medication become unmanageable.

If you are having trouble adhering to your treatment for any reason, you should bring this issue to the attention of your neurologist for their guidance and recommendation.

In all, the most important thing about doctor visits — early on and beyond — is that you feel comfortable, Brewster said.

“Trust your instincts,” she said. “You should feel respected, cared for, and attended to. If you feel otherwise, pay attention to this and consider finding a different provider. Doctors are busy, but you should not feel rushed or ignored. We all need to feel like our doctors are listening to us and taking us seriously.

“You deserve this.”