Relapsing-Remitting MS Affects Each Person Differently

Most people with multiple sclerosis (MS) have experienced relapses of their disease at one time or another 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). RRMS is the initial diagnosis for 85 percent of people with MS, the NMSS notes.

But, what exactly does a relapse look like? For one person, it might include episodes of fatigue and vision problems, according to 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 still 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 36-year-old office administrator 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.” This worsening of symptoms during hot and humid weather is common in people with MS, but it is temporary, according to the NMSS.

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 plus 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 with treatment.

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

“Especially when I was going through relapses and 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 disease relapses following diagnosis, others go years without “attacks,” according to Cleveland Clinic.

Erica De Voy, a 44-year-old hospital nurse who lives in southern Colorado, has lived without major symptoms most of the time since being diagnosed with MS in 2015.

Like Ringstaff, De Voy had vision problems early in the course of her disease — 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 these symptoms return since starting 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 only realized it might be an MS symptom 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 research, fatigue is the most common symptom of MS, affecting 75 to 90 percent of people with the disease. Exercise, improved sleep, and medication can be helpful.)

Today, De Voy is fatigued from time to time, but no more than once every 9 to 12 months. She’s also noticed some issues with bladder urgency, but she hasn’t experienced any muscle pain, numbness, weakness, or spasticity, all of which she expected when she was diagnosed.

“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’s had a fairly good run so far, De Voy realizes 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, a clinical professor of neurology and the 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.

But, 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.

Research shows growing evidence that even after an MS flare subsides, people with progressive MS may still sustain ongoing tissue injury due to dark-rimmed spots that represent ongoing, “smoldering” inflammation, which are called chronic active lesions.

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 who had 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 that as MS research progresses, more subtypes of the disease will be discovered, and treatments might be tailored to each one, Apperson says. For now, though, 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 is that she runs — 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.”

No matter what course your RRMS takes, working closely with your doctor and following your treatment plan are the best ways to manage your symptoms and live your best life with MS.