Researchers say “invisible symptoms” that aren’t necessarily associated with multiple sclerosis can actually be affecting quality of life the most.
The symptoms commonly associated with multiple sclerosis-related disabilities are not necessarily the ones causing the most problems.
Researchers in Switzerland recently took a thorough look at which symptoms people with multiple sclerosis (MS) complain about the most and concluded that “invisible symptoms” can have a big impact on quality of life.
They also found that the type of MS and course of the disease play a role in how different symptoms affect quality of life.
The research looked at 855 people in the Swiss Multiple Sclerosis Registry. Of them, 611 patients had relapsing-remitting MS (RRMS) and 244 had progressive MS (PMS).
The registry is funded by the Swiss Multiple Sclerosis Society and operated by the University of Zurich. This new study was one of the first projects using this registry database.
The paper concluded that patients with RRMS reported gait and balance problems along with depression and fatigue as major factors affecting quality of life.
Those living with PMS reported paralysis, spasticity, weakness, and pain as those most affecting quality of life.
And while some symptoms may occur more frequently, it’s the other, less frequent symptoms that may cause more problems.
“We wanted to put the focus back on things that are often disregarded,” Laura Barin, a first author of the study and a doctoral student at the University of Zurich, told Healthline.
The research looked at RRMS and PMS separately, using a statistical model to reveal which symptoms could better explain the quality of life differences among people with MS.
Using patient-reported information, they measured quality of life every six months with different measurement tools.
The symptoms investigated included problems with balance, bladder, and bowels, as well as dizziness, depression, dysarthria (slurred speech), dysphagia (difficulty swallowing), epileptic seizures, fatigue, gait problems, memory problems, pain, paralysis, paresthesia, sexual dysfunction, spasticity, tics, tremor, visual problems, and general weakness.
The study looked at both objective and subjective quality of life.
“Subjective quality of life was measured by asking ‘On a scale from 0 to 100, where 100 is the best health status you can imagine, how do you feel today?’” Barin explained.
“Objective quality of life incorporates instead the severity of problems in five different areas,” she added, “namely mobility, self-care, everyday activities, pain or discomfort, anxiety or depression.”
Barin noted the study “is not just about MS.”
“We found that patients can report information about their health and it can be reliable,” she said. “This patient-reported information can be used for sound research, not just tests and exams.”
Viktor von Wyl, a senior study author and head of the Swiss MS Registry, told Healthline that “this is the first study of its kind.”
Researchers had direct contact with patients in the study and spoke with them on a regular basis.
“We heard lots of stories about how symptoms have influence on their lives,” said von Wyl. “This information could help healthcare providers and patients choose what to focus on first for quality of life.”
Kathy Young, an MS activist, told Healthline, “Life with an invisible disease provides both advantages and disadvantages. I can pretend — both to myself and others — that everything is fine, even when it’s not. This is the same reason that makes it a disadvantage.”
“This study underscores the importance of treating symptoms in people with MS, in combination with DMT, and also that while obvious problems such as mobility disorders affect QOL, the ‘invisible’ symptoms such as fatigue, mood disorders, and spasticity also may significantly impact QOL and should be recognized and treated.” Dr. Barbara Giesser, professor of clinical neurology at the David Geffen School of Medicine at the University of California Los Angeles (UCLA) and clinical director of the UCLA MS program, told Healthline.
“This study provides an important message to keep in mind,” added Nick LaRocca, PhD, vice president of healthcare delivery and policy research for the National Multiple Sclerosis Society. “There are various symptoms in what we call MS and all have implications in daily life.”
LaRocca explained that this study is a good exercise to help educate everyone in terms of what are the full ramifications of MS. He also suggested that the results might be a little different in a different country.
“It’s not just symptoms, but there are things happening in daily lives making a difference,” said LaRocca. “The more you look at this study the more you learn about the spectrum of daily activities that can be effected by MS.”
The study has other implications as well, LaRocca said.
“When we work with regulators about how clinical trials can be done, it is important to have this information to show the functional impact of MS on daily activities,” he explained.
Von Wyl reminds us, “MS is a complex disease and we shouldn’t treat all patients the same.”
During the study, one MS patient shared, “This [study] is really helpful to me because now I realize other participants have these symptoms as well. My doctor negated this as an MS symptom but here it is on a list.”
Editor’s note: Caroline Craven is a patient expert living with MS. Here award-winning blog is GirlwithMS.com and she can be found on Twitter.