6 Important MS Questions to Ask Your Neurologist at Your Next Checkup
Multiple sclerosis (MS) is a lifelong condition. Anyone can develop MS, but most people are diagnosed with MS between ages 20 and 50. As the years go by, you’ll likely learn a lot about your condition and what works for you. But MS can also change over the years. For example, symptoms may worsen, or the disease may become inactive.
Checking in regularly with your doctor can help you stay on top of your condition, help you maintain independence, and promote long-term quality of life. Here are the MS questions to ask your neurologist at your next checkup.
1. What Do My Symptoms Mean?
Most people with MS have relapsing-remitting MS (RRMS), in which the disease is marked by periods of symptoms—known as flares, attacks, or relapses—and periods of remission, or relative improvement in symptoms. There may even be some pseudo-relapses, where symptoms of prior relapses can become apparent.
Keep in mind that there can be MS disease activity without any warning signs or symptoms—which is why you should check in with your doctor, who may periodically recheck your MRIs. “If you repeat your MRIs and see reports of new lesions or active lesions on the MRI, that's a sign that your MS is not well controlled,” says Bardia Nourbakhsh, M.D., a board-certified neurologist and assistant professor of neurology at Johns Hopkins School of Medicine.
On the other hand, some people may notice a gradual decline of neurologic function. Relapses may still occur, but there may not be a full recovery, and over time, there may be cumulative disability. In these cases, it could mean that the disease is evolving to secondary progressive MS (SPMS). SPMS can be categorized as “active” or “inactive,” which describes whether or not there are relapses or evidence of new lesions shown on an MRI. It can also be described as “with progression” or “without progression,” which describes whether or not the person has had an increase in disability over time.
“Most often, what people notice is that, slowly over time, MS symptoms that they already know about that they’ve had for a while seem to be getting worse,” says Lindsay Ross, M.D., a board-certified neurologist and MS specialist at the Cleveland Clinic, in Ohio. “People tell me that symptoms used to only come out under stress or after so long into the day, but now they happen earlier, it takes less to bring them out, or they're more impactful on their life.”
It’s also important to note that about 15% of patients with MS are diagnosed with primary progressive MS (PPMS), which means that they don’t present with the classical picture of relapse and remission. Rather, the illness is defined by gradual progression of disability over time, although there can be periods of relative stability, as well as episodes of relapses, during the course of their disease.
2. What Happens If My Treatment Stops Working?
If you’re following your treatment plan exactly as prescribed, but you’re experiencing relapses or changes in ability levels, or your MRI shows new or active lesions, it might be time to switch treatments.
Depending on your particular situation, your doctor may recommend switching to another drug in the same class as your current medication, or changing things up altogether. “Usually, we use a strategy called escalating medications—using or switching to more effective medications,” explains Nourbakhsh.
Today, over 20 disease-modifying drugs are available to treat MS. “There are a number of choices,” says Ross, who adds that there are also treatments for specific symptoms that might be beneficial, too.
And although rare, if you do run out of traditional treatment options, ongoing research continues to present new alternatives. “In rare cases, if a patient fails all pharmaceutical options, a hematopoietic stem cell transplantation after ablation of existing immune cells may achieve sustained control of disease activity,” says Hesham Abboud, M.D., a board-certified neurologist and the director of the Multiple Sclerosis and Neuroimmunology Program at University Hospitals Cleveland Medical Center, in Ohio.
Note: It’s important to not stop taking your medications without first talking to your doctor.
3. Can Complementary Therapies Help?
According to the National Multiple Sclerosis Society, most people who have MS incorporate complementary therapy into their overall MS management plan. That may include things like:
- Making dietary changes
- Taking a vitamin D supplement
- Exercising regularly
- Practicing yoga
- Trying acupuncture
- Using cooling strategies, like wearing a cooling vest or swimming in cool water
- Managing stress
- Participating in music therapy
“Exercise, eat healthy, and take care of your body, because MS is attacking it, and as the old saying goes, ‘the best offense is a good defense,’” say Dan and Jennifer Digmann, who write about life with MS on their blog, A Couple Takes On MS.
And signing up for other types of therapy services may also help you stay in control of MS, adds Nourbakhsh. “Part of comprehensive management of MS, aside from taking medications, are other things like rehabilitation, physical and occupational therapy, or speech therapy,” he says.
Just remember to keep taking your prescribed MS treatment, as well. “None of these complementary approaches have been rigorously shown to be effective—or as effective as our FDA-approved treatments—at preventing new MS damage,” Ross says, “but they can often be beneficial support for helping to control MS symptoms.”
4. Should I Sign Up for a Clinical Trial?
You may also want to see if you qualify to join a clinical trial. A clinical trial evaluates new ways to prevent, detect, or treat and manage medical conditions safely and effectively. And if your MS proves challenging to treat, this might be something you’d be interested in exploring. “Newly diagnosed patients can join open-label clinical trials testing specific new outcomes of already FDA-approved medications,” Abboud says.
There are certain situations in which you might be especially interested in participating in one. “I recommend patients who have been diagnosed with progressive types of MS consider talking to a neurologist about available clinical trials,” Nourbakhsh says. That’s because there are fewer approved medication options for people with progressive forms of MS—either primary progressive or secondary progressive—than there are for those with relapsing forms of MS.
You may also be interested if you’ve lost certain functions. “Current immunotherapies do not restore lost function,” Abboud explains. However, new research shows that a process called remyelination may help repair affected nerves and, in turn, restore function. “More improvement is expected in the future if ongoing remyelination clinical trials prove successful,” Abboud says. “I would recommend remyelinating and regenerative MS trials for all MS patients to restore lost function.”
Visit ClinicalTrials.gov to search the directory of all available trials to see what might be applicable for you.
5. Which Assistive Devices Can Help Me?
Various symptoms can interfere with mobility and affect your ability to move or get around with ease when you have MS. But the use of assistive devices may help you maintain your independence.
“There are a number of choices out there, and [options] depend on what problem you’re dealing with,” Ross says.
Consulting with a rehabilitation specialist, like a physical therapist or occupational therapist, can help you determine which types of devices would benefit you most. “They can guide you about using the best version … [as well as] the size or the fit of the assistive device, which is very important,” Nourbakhsh says.
6. What Other Steps Can I Take to Manage My MS?
Don’t forget to prioritize your overall health, not just treating your disease.
“We know that age-appropriate health screenings, controlling vascular risk factors, keeping up on your immunizations, and managing any other health conditions that come up is increasingly important,” Ross says. “Conditions like high blood pressure and cholesterol problems can influence and worsen the level of disability from MS. So, it's not only important for someone to take care of their MS, but it's important to take care of their overall health and wellness.”
And don’t forget to pay attention to your mental health, as well. “Mental health issues such as depression and anxiety are very common among people with MS,” Nourbakhsh says. “Addressing them is very important, both from the quality-of-life standpoint, and also, there are studies showing that mental health conditions—depression, anxiety—can increase the risk of physical disability down the line.”
So, don’t be afraid to ask for help if you need it.
Finding Support Beyond the Doctor’s Office
While your neurologist can answer your most pressing MS questions and will help you manage your condition, it’s also a good idea to seek support for everyday life with multiple sclerosis. Getting involved in the MS community can go a long way toward helping you feel less alone and learning even more about the disease. You can do that in a variety of ways, such as joining support groups, volunteering, or becoming an MS advocate.
“Support groups are good from the standpoint that you get to learn from each other … about assistive devices, medications, mental health, diet and exercise,” Nourbakhsh says.
Support groups and online groups like this one can help you garner expertise from the MS community—and pay it forward. That’s essentially why Dan and Jennifer started blogging about MS in the first place.
“Way back when we were diagnosed in 1997 (Jennifer) and 2000 (Dan), information was not easily accessible,” they say. “Thankfully, we both found local MS support groups. But we remember how scared and lonely we were in this new chronic-illness world. We share our story now because we never want someone in our MS community to feel that same way.”
You can also meet other people with MS by signing up for events, like MS walks or bike rides. Or become an activist to advocate for changes to policies and programs that can benefit everyone with MS.
And when it comes to your day-to-day care, you are your own best advocate, say Dan and Jennifer: “Patience, knowledge, and advocating for yourself help so much.”
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