Newly Diagnosed With MS: 12 Questions to Ask Your Doctor
Learning you haveĀ multiple sclerosisĀ (MS) can be shocking and confusing. You know you need more information ā a lot of it ā but you arenāt 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.
ā[Doctors] become a character in each patientās story, and we will impact how that story unfolds from that moment. This is a responsibility, but also a privilege and an opportunity,ā said Annie Brewster, MD, a practicing internist at Massachusetts General Hospital in Boston who also has MS. āI now clearly understand that a doctorās job is not simply to diagnose and āmanageā diseases, but rather toĀ partner with patientsĀ in the ongoing journey of navigating illness.ā
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 yourĀ MS diagnosis.
12 questions to ask your doctor after an MS diagnosis
We asked some of our community contributors atĀ Multiple Sclerosis News TodayĀ for questions they think peopleĀ newly diagnosed with MSĀ should be asking their doctors. While not exhaustive, this list is meant to help you gain a fundamental understanding of your condition and how it will affect your life.
Not all these questions may come up during your first visit with your neurologist, but asking them early on can help better prepare and inform you about what to expect as you learn how to live with MS.
1. Do you specialize in MS?
Neurologists are qualified to make an MS diagnosis; however, not all neurologists specialize in MS.
Ed Tobias, aĀ Multiple Sclerosis News TodayĀ columnist and forum moderator, said it is important for MS patients to have an MS specialist.
āIn my experience in dealing with other people with MS, I hear all the time that general neurologists just donāt understand the disease and that youāll get a much better result if you go to a specialist,ā said Tobias, 73, a retired Florida resident who was diagnosed withĀ relapsing-remitting MSĀ in 1980, which has since transitioned toĀ secondary progressive MS. āItās hard to find them, especially outside of metropolitan areas, and thatās a problem.ā
Desiree Lama, a community collaborator forĀ Multiple Sclerosis News Today, was in her senior year of high school when she was diagnosed in 2016 with relapsing-remitting MS. āWhen I was diagnosed, we were looking for a specialist because I got referred to a neurologist who didnāt really tell me anything,ā said Lama, 23, of Texas. āHe was, like, āGo and research MS and come back.ā And I was confused because I was young and really didnāt know what it was.ā
Although her family ālucked outā 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 āgood,ā especially for those who live in rural areas, the fact is most MS patients are cared for by a general neurologist. āIf itās a three-hour drive, Iām not sure a patient needs to see a specialist on an ongoing basis,ā 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.
2. What type of MS do I have?
MS is broadly classified intoĀ four main typesĀ based on disease progression: clinically isolated syndrome, relapsing-remitting, secondary progressive, and primary progressive. Knowing which form of MS you have can help you understand your specific symptoms and treatment options.
Itās appropriate to ask your neurologist whether they are āconfidentā you have a certain MS type, Bowling said. However, if there is any murkiness about your diagnosis, ask how certain they are that you even have MS. If there is uncertainty, you should consider getting a second opinion.
3. What do my MRI results mean?
Magnetic resonance imaging, or MRI, is used to help diagnose MS and to monitor and track the diseaseās progression, which can aid in making treatment decisions.
MS is characterized byĀ 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.
āSomeone could ask, āHow many lesions do I have, and can I look at my MRI?ā That might make things more real to them,ā Bowling said. āIf 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.ā
Arelis Castillo, 30, is a community collaborator forĀ 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.
āI went to my doctor and said, āExplain lesions, where they are, and how theyāre going to affect me.ā Itās highly important just to understand it,ā 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 donāt always correlate with new symptoms.
āThere isnāt a real great correlation between results and quality of life,ā he said.
4. How does an MS diagnosis affect my quality of life?
After being diagnosed with a chronic disease like MS, itās natural to have questions about your prognosis and how the disease will affect your daily life. While the answer to this question will differ depending on the individual circumstances, your neurologist should be able to help you come to terms with your diagnosis and provide some guidance on managing your MS on a day-to-day basis.
As a progressive disease, MS leads to increasing disability over time, be it physical and/or in terms of cognition. It is estimate that more than half of MS patients will experience cognitive problems ā damage to the nervous system in MS can cause difficulty with thinking or reasoning, planning, problem-solving, and learning.
āWhen I got the diagnosis, I went home and had a panic attack,ā saidĀ Multiple Sclerosis News TodayĀ community collaborator Rochelle Roberts, 24, who was diagnosed with relapsing-remitting MS in 2020. āI wasnāt asking clinical questions, I was asking quality-of-life questions like, am I going to have trouble walking all the time? Those were the things I wanted to know.ā
Tobias said, āThe most important question I asked when I was diagnosed was, is this going to shorten my life? When I heard, probably not by much, it was OK.ā
5. What should I do if I think Iām having an exacerbation or experiencing a new symptom?
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.
ā[This] question is a good way to get a read on a neurologist,ā Bowling said. āIf they hedge or donāt get back with me that day, thatās concerning.ā
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: āWhenever I think Iām experiencing something new, Iāll Google it to see if itās something else or an MS symptom, and then Iāll reach out to my MS specialist, and if I feel like itās completely necessary to go see her, Iāll schedule an appointment so we can talk about it.ā
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.
6. Will my MS continue to progress?
Multiple factors, including those genetic and environmental in nature, likely contribute to the development and progression of MS.
āAs soon as I was diagnosed, I assumed it would progress,ā Roberts said. āThatās the mindset Iām perversely preparing myself for. I think itās a valid question, since everyone gets diagnosed at a different stage. Itās basically a āwhatās next?ā question.ā
Each patient journey is different, making it difficult to predict the course of the disease for each individual. Some patients may progress faster than others.Ā MS risk factorsĀ that can affect the disease course include the disease type, treatment, lifestyle factors, and biological traits.
Bowling said itās important that patients have realistic hope about their future. āMany physicians assume MS is a homogeneous disease, but itās not,ā he said. āAnd theyāll look at statistical averages for 500 people. But itās unfair to patients to convey that.ā
In that light, patients might want to ask their doctor how things look for them now in their MS course, Bowling said.
7. What are my treatment options, and which one is best for me?
With a number of approved MS-modifying medications now available, itās 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.
āIf only one option is presented, thatās concerning,ā Bowling said, adding that patients should ask about potential side effects.
Castillo said, āThese are valid questions about treatment because you really want to get on the right one, for whatever stage you start off with.ā
When Roberts was diagnosed, her neurologist explained her disease stage and ultimately presented her with threeĀ MS treatment options, plus their top choice. They also delved into the efficacy, intensity, and possible side effects of each treatment. āIt came down to, which one do you think is best, and what can I expect from it?ā she said.
8. Does my insurance cover my MS treatments?
TheĀ financial issuesĀ that come with dealing with a chronic condition like MS can be just as stressful as the disease itself. Itās important to understand early on what your options are and the type of coverage your insurance provides for your treatments. Likewise, if you donāt have insurance, you should inquire about any alternatives that may be able to help you.
āI try to keep insurance out of it until we come up with the drug that seems like the best,ā Bowling said. āThen we push as hard as we can on the insurance side.ā
āMS is stressful, but having financial stress adds on to it. Itās just really important to have these questions answered so that people feel at ease and know theyāre going to be getting the things they need for their health,ā Castillo said.
9. What else can I do to manage my symptoms on a day-to-day basis?
In addition to medications, other strategies may help MS patients manage their symptoms and feel their best. Bowling refers to this as āintegrative medicine,ā 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.
āI 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,ā Bowling said. āSo, itās worth asking about medication and non-medication approaches to managing symptoms.ā
āItās a very important question,ā Castillo said. āI always look at things as like a balance. Iām dealing with the [disease-modifying treatment] side of it, but what are other things you can do? Exercise, different workouts, meditation, yoga ⦠itās important to highlight these as well because thatās also dealing with symptoms.ā
Brewster said, āIn truth, making healthy lifestyle choices will improve life overall, not just MS.ā
10. What specialists should I see to manage my disease and symptoms?
The National Multiple Sclerosis Society advises aĀ comprehensive, coordinated careĀ approach to managing MS. This often involves the expertise of different healthcare professionals besides neurologists ā such as primary care physicians, urologists, rehabilitation therapists, and mental health providers.
While your neurologist may be the one who makes the treatment decisions, itās important to understand how other healthcare providers and specialists may work together to ensure the best comprehensive management of your particular situation.
11. What do I do if I donāt feel my medication is working, or I canāt follow the regimen?
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, āHow will I know if my medication is working or not?ā
Patients may not be able to follow a treatment regimen for several reasons. For example, the method of administration ā which can include injectables or oral medications ā 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.
12. Are there any clinical trials that may be an option for me?
Clinical trials are at the center of medical advances. The goal of these trials is to evaluate whether a device, procedure, or pharmaceutical therapy is safe and effective. Such studies also may assess new ways of using existing treatments, gauge other aspects of care, or simply record daily life with a condition over time.
People with the disease ā in this case, MS ā and healthy volunteers, known as controls, may be enrolled in clinical studies. All participants are monitored so that any issue or potential risk is identified as soon as possible. These trials are regulated by law and require federal approval before they start.
āPeople are hungry for clinical trials fairly early on, in the discussions I see,ā said Tobias, who participated in one study early in his patient journey but didnāt receive an actual treatment candidate.
Bowling said, āTrials were a big deal 15 years ago when there werenāt so many drugs. Now, I think most people with MS will go to a trial and not be sure which treatment theyāll be on. But itās rare that someone will risk knowing.ā
Final words of wisdom
In all, the most important thing about doctor visits ā early on and beyond ā is that you feel comfortable, Brewster said.
āTrust your instincts,ā she said. āYou 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.ā
Multiple Sclerosis News TodayĀ 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.