Relapsing-Remitting MS: The Disease That Affects Everyone Differently

Most people with multiple sclerosis (MS) have at one time or another experienced relapses of their disease, or periods of worsened symptoms that usually resolve at least partially. Relapses are a defining feature of relapsing-remitting MS (RRMS), which is the most common form of the condition, according to the National Multiple Sclerosis Society (NMSS). Moreover, RRMS is the initial diagnosis that most people with MS receive, notes the NMSS.

But what exactly does a relapse look like? For one person, it might include episodes of fatigue and vision problems, per the NMSS. For another, it could mean numbness and bladder problems.

There’s often little consistency in symptoms from one person with MS to another. And once you know you have MS, you’re still faced with the uncertainty of when a relapse will occur.

Here are some of the ways that symptoms of relapsing-remitting MS can vary from person to person, as well as why this may be the case — and what we don’t know about why this disease affects people so differently.

Ashley: Frequent Symptoms and Dealing With MS Triggers

Some people with relapsing-remitting MS deal with a number of frequent symptoms, which sometimes seem to be connected to certain triggers, according to Johns Hopkins Medicine.

For Ashley Ringstaff, a 33-year-old patient care coordinator in Austin, Texas, who was diagnosed with MS in 2010, frequent symptoms include fatigue, cognitive issues, neuropathy, spasticity, and migraines.

“I can sometimes tell when they’re going to get worse,” she says. “I live in central Texas, and the heat really flares it up. And if I do too much, I can have really bad symptoms the next day.” (According to a 2018 review published in Temperature, heat sensitivity, also called Uhthoff’s phenomenon, occurs in 60 to 80 percent of people who have MS.)

For Ringstaff, neuropathy comes in the form of burning and tingling in her feet and, at times, face.

As for her cognitive issues, “I’m just slower. I don’t remember a lot of things. I’m not always coherent with my thoughts, and I have to ask people to repeat themselves,” she says.

Ringstaff has found that a medication she was prescribed for fatigue also helps with mental focus. In addition, she tries to take some time out of every day — away from her two sons and husband — to relax and rest.

To combat fatigue when the weather is hot, Ringstaff wears light, breathable clothing, carries cooling packs wherever she goes, and uses a 5-gallon bucket filled with ice water and topped with an electric fan to blow cool air or mist onto herself.

In addition to her current symptoms, Ringstaff has also dealt with vision problems, foot drop, and anxiety in the past. Her vision issues — one of her initial MS symptoms was double vision — have since resolved as her MS got treated.

Physical therapy and strength training have helped get her foot drop under control, while relaxation techniques and simply getting effective MS treatment have minimized her anxiety.

“Especially when I was going through relapses and I was on medications that weren’t working, I was almost living in fear, not knowing what I was going to get when I woke up,” she says.

Erica: Minimal MS Symptoms and No Relapses

Although many people with relapsing-remitting MS experience regular symptoms and have disease relapses following their diagnosis, others go years without experiencing “attacks,” according to the Cleveland Clinic.

Erica De Voy, a 41-year-old hospital nurse who lives in southern Colorado and was diagnosed with MS in 2015, has lived without major symptoms for most of the time since then.

Like Ringstaff, De Voy had vision problems early in the course of her disease — in this case, pain in her right eye and a gray spot in the center of her vision, caused by optic neuritis.

But De Voy hasn’t seen this symptom return since she started treatment for MS, and the only new symptom she has developed is occasional fatigue. Even this didn’t initially strike her as unusual.

“I work as a nurse, and I work weekend nights,” she says. “When you work night shifts, it’s not unusual to be tired.”

Her first bout of fatigue involved sleeping for 12 hours, followed by another 6 hours soon after that. She realized it might be an MS symptom only when her husband pointed out how atypical it was.

Before she had MS, De Voy says, she always thought of fatigue as a feeling of having overexerted herself, rather than just being tired. But after talking with her neurologist, she got a sense of how differently people with MS can experience fatigue. (According to a 2016 article published in Current Treatment Options in Neurology, fatigue affects up to 80 percent of people who have MS. Exercise, improved sleep, and medication can be helpful.)

Today, De Voy experiences fatigue from time to time, but no more frequently than once every 9 to 12 months.

De Voy has also noted some issues with bladder urgency, but she hasn’t experienced any muscle pain, numbness, weakness, or spasticity, all of which she expected when she got her diagnosis.

“My aunt had MS. I watched her slowly deteriorate, and it was devastating,” she recalls. “It took me a long time to really accept that no two people with MS are the same.”

And even though she has had a fairly good run so far, De Voy realizes that MS is unpredictable. “You never know when you’re going to wake up and have a new symptom,” she says.

What Accounts for Different MS Symptoms?

It’s difficult to account for the differences in symptoms seen in people with relapsing-remitting MS, according to Michelle L. Apperson, MD, PhD, an associate clinical professor of neurology and director of the multiple sclerosis program at the University of California in Davis.

“MS can affect the different parts of the nervous system in a relatively random way,” she says.

There are some overall patterns connecting MS pathology and symptoms, Dr. Apperson notes — for example, people with greater disability often have more spinal cord lesions, and having more brain lesions is associated with greater cognitive difficulties and other symptoms.

In a paper published in JAMA Neurology in August 2019, researchers for the National Institutes of Health looked at the brains of hundreds of MS patients and discovered that dark-rimmed spots representing ongoing, “smoldering” inflammation, called chronic active lesions, may signal more aggressive and disabling forms of the disease.

But that doesn’t mean any one person’s symptoms can be neatly explained or predicted. “Each individual might have a very different presentation and types of symptoms,” Apperson explains. “We can’t really predict what their relapses or future symptoms will tend to be” based on MRI results or any other measurable factor.

Even relapse triggers can be difficult to identify, as they tend to be common things such as stressful events and viral infections. “It’s hard to prove an actual link,” she says.

Apperson notes that in postmortem (autopsy) analyses of the brains of people with MS, there are certain patterns of demyelination (neurons losing their protective layer) that most people fall into — but these patterns of disease activity don’t correspond well to what the person’s MS looked like when they were alive.

It’s possible, Apperson says, that as MS research progresses, more subtypes of the disease will be discovered, and treatments might be tailored to each one. But for now doctors have little to base their treatment decisions on except for the severity of the disease and how a patient responded to previous treatments.

Even after treating scores of patients over many years, Apperson is still amazed by the variety of symptoms and disabilities she sees.

One patient of hers has mostly vision-related MS symptoms and is legally blind but can function relatively well in everyday life. What makes her stand out, though, is that she runs in — and finishes — 100-mile races.

Yet in other cases, “you have somebody with one attack who is wheelchair-bound for the rest of their life,” Apperson says. “It’s so random how it affects people so differently.”