Being told that your multiple sclerosis (MS) is “benign” or “mild” might feel reassuring at first. These words can make MS sound less concerning or even harmless.
But “benign” MS isn’t risk-free. It can still involve symptoms that are harder to notice, measure, or track. That’s one reason the term is controversial. Some health experts don’t recommend using “benign MS” because it may understate the possible impact of the condition.
In this article, we’ll cover the definition of benign MS, why the term is debated, and how mild MS can still carry risks.
“Benign MS” is sometimes used to describe MS that causes few symptoms or little disability over many years. However, there isn’t one universally accepted definition.
Health experts have used several criteria to decide whether MS may be considered benign or mild. MS progression can range from mild to severe, and your doctor will most likely consider the following factors.
Some health experts consider MS benign only if a person has gone 15 years or more with no symptoms or very mild symptoms. A long period of remission — when symptoms improve or disappear — may be one sign that MS is mild.
Your doctor may also consider how often you’ve had MS attacks, also called relapses or flare-ups. MS may be described as mild if attacks are few and far between or if symptoms during attacks are less disruptive than symptoms such as trouble walking or urinary incontinence.
Other health experts use a person’s score on the Expanded Disability Status Scale (EDSS) at least 10 years after MS diagnosis.
The EDSS is a tool doctors use to measure MS progression and disability on a scale of 0 to 10, with 10 representing the highest level of disability. Scores increase by increments of 0.5. Doctors determine a person’s score by evaluating symptoms across eight functional systems — such as visual function, brain function, and bowel and bladder function — along with the person’s ability to walk and perform daily activities.
Some health experts define benign MS as an EDSS score of 3.0 or lower after a person has had MS for 10 years or longer. This may suggest that MS hasn’t progressed much or is progressing slowly.
Here’s a simplified breakdown of what each score means:
One main reason the term “benign MS” is controversial is, it only describes a person’s past and current experience with MS. It’s not an effective predictor of whether someone will relapse in the future nor of their MS prognosis (outlook).
Another concern is that EDSS scores don’t capture every MS symptom. Someone may have a low EDSS score because they can walk and live independently, but they still have symptoms that affect daily life that aren’t captured by EDSS, such as fatigue or cognitive changes (changes related to brain function, like memory or focus).
To address these concerns, some health experts have suggested using terms such as “minimal-worsening MS” instead of “benign MS.” This wording may better reflect the unpredictable course of MS while leaving room for symptoms that aren’t captured by the EDSS.
Despite being classified as a mild form of MS, benign MS still carries some risks. Some risks are due to the MS itself, while other risks are related to the diagnosis and assumptions surrounding it.
It’s possible for a person's MS to relapse, even if they’ve been in remission for years or even decades. The term “benign MS” might lead someone to assume that a relapse isn’t possible or is highly unlikely, especially if they have very few brain and spinal cord lesions.
Even if someone doesn't have a full-on relapse, their MS may still progress faster than they might have expected. Progression independent of relapse activity (PIRA) can drive MS disability, even if someone never has a true relapse again. A person’s EDSS score may increase over time because of PIRA alone.
Benign MS can involve MS symptoms, such as cognitive impairment and fatigue, that aren’t named on the EDSS scale. Some of these symptoms may be more subtle or harder to measure in the context of a person’s MS diagnosis, but they can cause significant challenges in everyday life.
Acknowledging these symptoms can help your care team understand the full picture of a person’s MS diagnosis.
In one small, long-term study, 83 percent of 18 of participants with benign MS showed cognitive impairment. Signs of cognitive changes in MS can include:
While the EDSS doesn’t fully account for cognitive impairment, other tests — such as the Symbol Digit Modalities Test (SDMT) — can evaluate cognitive impairment more thoroughly in people with MS.
The EDSS doesn’t directly address fatigue, but it’s a symptom that many people with benign MS live with. The study of people diagnosed with benign MS found that about half experienced significant fatigue, which can have a significant impact on quality of life.
Being told you have benign MS may lead you to avoid or inconsistently receive treatment. You might not want to take medications for MS that seems to be in remission or doesn’t involve disability.
Studies have shown that taking disease-modifying therapies (DMTs) may slow MS progression in people with benign MS, which suggests that people with benign MS can still have significant inflammation and neurodegeneration.
Some doctors recommend that people with benign MS still start DMTs early to manage their MS. Some older adults with stable MS may be able to consider stopping a DMT, but this is not safe for everyone.
If you’ve been in MS remission for years and don’t feel like your MS is getting worse, ask your neurologist if your MS is considered benign.
They can assess your MS symptoms using the EDSS, SDMT, and other tests to understand the full scope of your disease and your risk of disease progression or relapse.
On MyMSTeam, people share their experiences with multiple sclerosis, get advice, and find support from others who understand.
What can you share about your experience with benign MS? Let others know in the comments below.
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