A person can develop multiple sclerosis (MS) at any age, but the condition is most often diagnosed in adults ages 20 to 50. Some health care experts estimate the average age of diagnosis is 34. Regardless of age group, however, everyone faces unique challenges on the path to diagnosis.
Although scientists have yet to discover a clear cause of MS, they’ve identified risk factors including biological sex, environmental factors, geographical location, and race and ethnicity. Currently, there are about one million people living with MS in the United States.
Here’s what members of MyMSTeam have shared and what the experts say about diagnosis during different stages of life.
Scientists estimate that 3 percent to 5 percent of MS cases develop in people under the age of 16. MS in children and adolescents under 18 is referred to as pediatric MS, or pediatric-onset MS (POMS). In children under 12, the female to male ratio for the incidence of an MS diagnosis is 1.2-to-1. For children over the age of 12, the ratio difference is higher, at 2.8 females per every male diagnosed.
MS affects children differently from adults in some key ways. During the first six years of POMS, children experience relapses (return of symptoms) two to three times more frequently than adults with early MS, according to the National Multiple Sclerosis Society. However, children also tend to recover more quickly and develop disabilities at a slower rate than adults.
Sometimes adults with MS recall experiencing unusual symptoms in their early years which they hadn’t realized resulted from having the condition. Teenagers may have mild symptoms of MS that fly under the radar, and they end up going undiagnosed until adulthood.
Such was the case for one MyMSTeam member, who said, “It took 19 long years to diagnose my MS. I was 16 (1976) when it started. My relapses were so far apart in the beginning, but as the years went by, my relapses became closer together, and more symptoms cropped up. The year my son was born (1990) was when some of the worse symptoms started, and doctors were able to rule out other illnesses. I was diagnosed in 1995.”
People who experience unusual or unexplained symptoms as teenagers may notice that those symptoms are worse or more frequent in adulthood, particularly when life gets busy or stressful. These worsening symptoms can sometimes be the trigger that leads to an MS diagnosis.
“I kept dropping things when I made dinner, and my balance was off while walking,” one MyMSTeam member wrote. “During that time, I was under a lot of stress at home and work. I made an appointment with my primary doctor, who recommended an MRI. The results showed a bunch of lesions in my brain and spinal cord.”
MS is considered the most common cause of nontraumatic neurological disability in adults. When it comes to types of MS and age, relapsing-remitting MS (RRMS) makes up 80 percent of MS cases for people aged 20 to 40. Most people with adult-onset MS develop secondary progressive MS during the disease course as they age, but 30 percent continue to have RRMS while they get older.
An MS diagnosis at age 50 or later is considered late-onset MS (LOMS). The average age of LOMS onset is between 53 and 67. Diagnosis after age 60 is considered very late-onset and accounts for only 1 percent of MS cases.
Like pediatric MS, LOMS is rare, representing between 0.6 percent and 12 percent of total MS cases. Although adult MS affects three times more women than men, LOMS is more common in men.
People diagnosed with MS at a later age of onset may have other conditions (called comorbidities) that complicate MS treatment. For example, cognitive impairment — such as trouble with memory, attention span, or decision-making — is often more pronounced. So, too, are vision problems, sensory disturbances, and motor dysfunction.
Fortunately, advances in disease-modifying therapies (DMTs) have helped slow disease progression and increase the life expectancy for people with MS. Talk to your neurologist about which treatments might work for you to potentially slow the progression of MS.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 191,000 members come together to ask questions, give advice, and share their experiences with others who understand life with multiple sclerosis.
If you have MS, when did you first begin to notice symptoms of multiple sclerosis? How long did it take to get an accurate diagnosis? Share your story in the comments below, or start a conversation by posting in the Activities feed.