For most people, living with relapsing multiple sclerosis (MS) means having more questions than answers. Neurology appointments are often infrequent and far too brief to ask everything you need to know about symptoms and treatments. MS is such a complex condition that even when you do receive answers, they may only lead to more questions.

Since answers can be hard to come by, MyMSTeam talked with Dr. Jacqueline Nicholas about the questions she hears most from the people she treats. Dr. Nicholas is a neuroimmunologist and an MS specialist. She’s the system chief of neuroimmunology and multiple sclerosis, director of MS research, and neuroimmunology fellowship director at the OhioHealth Multiple Sclerosis Clinic in Columbus, Ohio.

Here are the top questions Dr. Nicholas is asked about MS symptoms and treatments, along with her answers.

Dr. Nicholas gets a lot of questions about how to manage MS symptoms, especially fatigue and memory problems.

Fatigue is a common MS symptom. Dr. Nicholas works with the people she treats to figure out what factors are contributing to fatigue and find ways to reduce them.

“The best way to address [fatigue] is to understand somebody’s lifestyle,” she said. “To see if they’re taking medicines that might be making them more tired, to make sure that they aren’t having other problems that could make their fatigue worse — like mood problems such as depression or anxiety — and also seeing if they’re incorporating any exercise. Then we try to formulate a good plan of how to boost energy for each individual.”

Sleep

Sleep is one of the most vital aspects of well-being in general and of fatigue in MS. “I always ask about sleep,” explained Dr. Nicholas. “Sleep can be challenging with MS because there’s a lot of things that can impact your sleep. For instance, if somebody tells me [they’re] getting up five times a night because [they] have to go to the bathroom, we may want to focus on bladder management.”

Other MS symptoms, such as spasticity or mood problems, can also affect sleep. “Some people will have spasms in their muscles, so we want to focus on treating that so they sleep better,” she said. “Sometimes things like anxiety or stress can impact someone’s ability to fall asleep or stay asleep. Managing mood and stress can really help somebody to get better sleep, and then they feel so much better during the day.”

Read more about ways to manage sleep issues with MS.

Exercise

According to Dr. Nicholas, research has shown that any amount of exercise can make a big difference for improving fatigue. “We have discovered that the most impactful thing we can do when [someone has] fatigue is to make sure [they’re] exercising,” she said. “I know that sounds crazy, and I get it. But exercise is important, and [it] doesn’t have to mean going to the gym or running several miles. It could be chair exercises for five minutes while watching a TV show or taking a break from work and walking a short distance. There are many ways to incorporate that in somebody’s life and help impact fatigue.”

Dr. Nicholas gets a lot of questions about cognitive problems, especially memory. Many people want to know how to handle these issues and prevent them from getting worse. For some, memory trouble is an early symptom of MS.

Cognitive Evaluation and Cognitive Therapy

“Memory is impacted very early on,” she said. “If we do evaluations of memory, even at the first symptom, people with MS are experiencing memory difficulties. We sometimes have somebody evaluated by a neuropsychologist, who can assess [their] memory and thinking — to see where the challenging areas are for an individual and then to see what we can do to maintain or improve memory.”

Cognitive and memory issues can vary widely between people with MS, and so can strategies for improvement. “It’s very individualized to the person,” said Dr. Nicholas. “Sometimes people have trouble multitasking. We can talk about techniques to minimize external distraction and focus on one task at a time — and make sure that we’re taking breaks.

“Sometimes we’ll send people to cognitive therapy, where they teach tricks and tips on how to optimize memory in their everyday life,” she continued.

MS symptoms can interrupt sleep and make fatigue worse, and they can also contribute to memory problems. Dr. Nicholas explained that finding ways to improve depression, anxiety, and fatigue can all make a difference for memory.

Muscle spasms are another common (and painful) symptom of MS.

Similar to the approach she described with fatigue, Dr. Nicholas talked about looking at all factors that might be making spasms worse: “Is [the patient] being well hydrated? Are they stretching? When are the spasms happening? Sometimes somebody just needs a good stretching program.”

If lifestyle changes haven’t addressed the spasticity, she then looks at other types of treatment. The good news is that there are many options. “Sometimes [they] need medications to address the muscle spasms,” Dr. Nicholas said. “Sometimes people need to go to physical therapy. But there are lots of different options that we can use to treat muscle spasms.”

Read about ways to cope with shoulder pain in MS.

Dr. Nicholas admitted that this can be a harder question to answer. “With MS, if our body’s not under perfect conditions, oftentimes old symptoms will rear their ugly heads,” she pointed out. “When the body’s overheated or stressed, we can see an increase in old symptoms.”

If the symptom goes away once you’ve cooled off or calmed down, it’s more likely a “pseudo relapse” related to old damage rather than a new MS attack, Dr. Nicholas explained.

If you suspect you’re having an MS relapse (also called a flare-up or exacerbation), it’s best to contact your neurologist. They’re your partner in identifying and managing relapses.

Read tips for staying safe and feeling your best while traveling with MS.

Currently, there’s no cure for MS. Disease-modifying therapies (DMTs) focus on reducing how many relapses you have, how severe they are, and how quickly the disease progresses. We’re more familiar with health conditions like infections, where we’re prescribed an antibiotic, and we take it and start feeling better — but, according to Dr. Nicholas, MS isn’t like that.

In people with MS, “our immune system is overactive and mistakenly thinks that our brain and spinal cord are foreign,” she said. “We use DMTs to prevent the immune system from being overactive and targeting our [central nervous system]. They’re really protecting the person from having more problems down the road.”

Essentially, DMTs help slow MS down by reducing immune system attacks: “In MS, the treatments are really all about preventing new damage and protecting our brain and spinal cord from additional damage over time. It’s really important that we talk about that and understand. Sometimes people will start a treatment and then they come back and say, ’I feel the same.’

“And I say, ‘Good! That means nothing new has happened.’ That can be a hard thing to understand.”

DMTs are expensive, and many people with MS delay or stop taking their medication because they can’t afford it. Dr. Nicholas described different types of financial assistance programs and urged people with MS not to forgo treatment due to cost. Your MS specialist can partner with you to find resources.

“For most any patient, whether they have insurance or not, we can often find resources to fund that treatment,” Dr. Nicholas said. “There are lots of resources through different organizations that support individuals with MS, as well as some assistance programs through the companies that make these medications, as well as within different institutions.

“Let us know,” she continued. “Don’t just stop coming and think that you can’t get care because you are worried about the cost or the resources. If you lose your insurance or if you’re concerned about the cost, come talk to me. We’ll figure it out together, and there’s always a way to get you a treatment.”

MS is a chronic condition, and it can take different courses over time. Some people with relapsing-remitting MS and other relapsing forms of MS have long periods of remission, with no relapses and no new or worsening symptoms. If you go years without having a relapse or new symptoms, you may wonder whether you still need to take your DMT. Dr. Nicholas explained that this is a controversial topic among MS specialists.

“We know that with multiple sclerosis, disease-modifying therapies help maintain memory, thinking, and physical function longer,” she stated. “But there is a lot of research looking at the fact that people may not need to take a treatment lifelong — that some people, when they reach a certain age, may be less likely to have new inflammation.

“There are situations where it can be appropriate for an individual to stop treatment as they reach an older age,” she summed up, emphasizing the importance of being monitored closely by a neurologist if this route is chosen.

Never stop taking your DMT without talking it over with your MS specialist first. They can help you weigh the benefits and risks and consider all your treatment options.

Dr. Nicholas also encouraged everyone with MS to find a neurologist they can trust to take care of them. “I’m on [my patients’] team,” she said. “I’m here to help them and to make this as less scary as it could possibly be. I want to empower them to understand and to be able to make the best choices for them to be able to fight back against this disease and also to live the best life possible.

“There is excellent care out there. If they don’t feel that [from their specialist], I think they should find someone to take care of them that they feel that way with,” she concluded.

Finally, Dr. Nicholas shared her perspective on the progress of MS care and its optimistic future.

“The face of MS in 2024 is very different than the face of MS five years ago, 10 years ago, 15, 20 years ago,” she said. “We have come light-years ahead. I agree we have a long way to go, but there is a lot of hope. There are so many people throughout health care and science that have dedicated their lives to better the lives of people with MS and to ultimately find a cure for this disease. The future is very bright, and you should have a lot of hope going forward.”

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