It’s not something anyone wants to think about, but after getting a diagnosis for a chronic (ongoing) condition like multiple sclerosis, it’s common to wonder, “How long will I live? What’s my life expectancy?”
People often associate chronic conditions with death, so it’s no wonder that when you or someone you know is diagnosed with MS, you start thinking of mortality. One MyMSTeam member summed it up: “I have a very real fear that MS will shorten my life drastically.”
So, what’s the life expectancy for people with MS? There isn’t one clear answer. The National Multiple Sclerosis Society estimates that, on average, someone with MS lives about seven years less than the general population. A study of more than 30,000 people in the United States with MS found that they lived six years less than the average life expectancy.
MS itself is not the cause of death, because MS is not a fatal illness on its own. Rather, the symptoms caused by its progression can lead to other conditions that are ultimately fatal. Pneumonia, infections, and falls are common causes of death that may be connected to MS symptoms.
Factors that influence MS prognosis include sex, ethnicity, how often you have relapses, and how old you were when you first developed the condition.
“MS is not a fatal disease,” one member said. “However, this can lead to other illnesses and problems as a result of how MS can affect your life. If you become less active, you may be at risk of heart problems, or someone may fall due to mobility problems.”
The many factors related to MS prognosis include:
In general, females with MS have a better prognosis (outlook) than males, as do people who are younger when their MS starts, according to research in Multiple Sclerosis and Related Disorders.
Race and ethnicity also play roles. Compared to non-Hispanic white people, African Americans are more likely to have a primary progressive form of MS, according to a 2020 analysis of people treated at a Northern California health system. In an earlier study, researchers found that Black people have a higher risk of dying from MS at an earlier age than white people.
Population studies suggest that MS mortality rates increase with age for males and females, peaking at 55 to 64 for non-Hispanic Black people and 65 to 74 for non-Hispanic white people, according to a study in the journal Neuroepidemiology. For Hispanics, Asians, and Pacific Islanders, mortality risk plateaus after age 55.
People who recover completely from their first attack have a better prognosis than those who don’t recover as well. Infrequent MS relapses and less cerebellar (involving part of the brain that coordinates balance and movement) and spine involvement are also associated with a better prognosis.
The different types of MS have different prognoses. People who have relapsing-remitting multiple sclerosis (RRMS) typically have a better prognosis than those with primary progressive multiple sclerosis (PPMS) or secondary progressive multiple sclerosis (SPMS). Because relapsing-remitting MS allows complete or partial recovery from symptoms before relapse, there’s usually less disability associated with it. SPMS, which occurs when someone with a previous RRMS diagnosis has worsening symptoms, indicates a more systemic condition.
One member reported feeling guilty when a friend with a more progressive form of MS died: “I felt guilty because he had PPMS, and I didn’t, and I had a life still in front of me.”
A rare type of MS is associated with a very dire prognosis — Marburg’s variant of MS, which is sometimes referred to as fulminant MS. This condition progresses even more rapidly than primary progressive MS and can lead to death in weeks or months.
For some people with MS, that’s not the only condition affecting them. Other medical conditions and comorbidities (co-occurring health conditions) can have an impact on the disease course.
A study in the journal Patient Related Outcome Measures found that the most common comorbid conditions for people with MS were:
Almost 30 percent of those with MS had either high cholesterol or high blood pressure. Up to 20 percent had some form of gastrointestinal disorder. Thyroid disease was present in 12 percent to 17 percent, and anxiety, depression, and chronic lung disease were each present in 7 percent to 15 percent of those studied. All those conditions are associated with a decrease in life expectancy.
Ask your doctor whether lifestyle changes may improve any risk factors that influence your outlook.
The slower MS progresses, the better the prognosis will be. The best way to slow MS is to treat it with disease-modifying therapies (DMTs). These medications are proven to delay the progression of symptoms for an overall better prognosis.
Many DMTs have been approved by the U.S. Food and Drug Administration (FDA) based on studies showing that they reduce the chance of relapse and slow disease progression and the accumulation of disability. Some DMTs are oral medications, while others are given by injection or intravenous (through a vein) infusions.
For most people with MS, DMTs will be taken long-term to modify the immune system and help control the chronic autoimmune disease. If you’ve tried one or more DMTs but continued to have MS relapses or had trouble sticking with the treatment, other options may work better for you.
Having a frank conversation with your neurology specialist about your treatment goals and preferences, along with potential benefits and risks of each option, is the best way to find an effective DMT that works for you.
Comorbid conditions should be managed alongside MS. Dietary changes and moderate amounts of physical activity are common ways to address high cholesterol and blood pressure. Your doctor should screen you regularly for depression and anxiety. All of these comorbidities, as well as thyroid disease, can also be managed by medication.
Ask your doctor whether lifestyle changes may improve any risk factors that influence your outlook. For instance, they might advise you to improve your diet, get more exercise, or stop smoking. Making these or other changes may help lower your odds of pneumonia, falls, or other common causes of death with MS.
Paying attention to your mental health can be just as helpful as dealing with physical well-being, although in different ways. The National Multiple Sclerosis Society recommends paying attention to your mood, seeking support from friends and family, and focusing on your quality of life. Although it might not seem easy to find positive experiences while managing MS symptoms, there’s usually something — your pet, perhaps, or a beautiful sunrise — that’ll help you focus on what’s good right now.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 206,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Have you discussed your prognosis and outlook with MS with your neurologist? What steps do you take to make sure you have as long and healthy a life as possible? Help other members by commenting below or starting a new conversation on your Activities page.
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Thanks for your comments Andrea and BelleTorres. Merry Christmas to everyone fitting this unwelcome journey.
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