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It’s not something anyone wants to think about, but when faced with multiple sclerosis (MS), almost everyone starts to worry: “How long will I live? What’s my life expectancy?”
People often associate chronic (ongoing) conditions with death, so it’s no wonder that when you or someone you care for has a diagnosis of 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, how long can someone live with MS? Does MS shorten your life? There isn’t one clear answer. One study of people in the United States with MS found that they lived six years less than the average life expectancy.
MS itself is not a cause of death, because MS is not a fatal illness on its own. However, the symptoms caused by its progression may lead to other conditions that can be fatal. Pneumonia, infections, and falls are common causes of death that may be connected to MS symptoms.
“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.”
Many factors can affect the prognosis — or outlook — of MS, including:
An article in the Journal of Personalized Medicine states that in general, females with MS have a better prognosis than males, as do people who are younger when their MS starts.
Race and ethnicity also play roles. Compared to non-Hispanic white people, African Americans are more likely to have primary progressive MS, which can be more serious, according to a 2020 analysis. In another 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. The rate of death peaks at ages 55 to 64 for non-Hispanic Black people and at 65 to 74 for non-Hispanic white people, according to a study in the journal Neuroepidemiology. For Hispanics, Asians, and Pacific Islanders, mortality risk doesn’t appear to increase after age 55.
People who experience a complete recovery from their first attack have a better prognosis than those who don’t recover as well. Infrequent MS relapses and fewer lesions on the cerebellar (involving part of the brain that coordinates balance and movement) and spinal cord are also associated with a better prognosis.
The different types of MS have different prognoses. People who have relapsing-remitting MS (RRMS) typically have a better outcome than those with primary progressive multiple sclerosis (PPMS) or secondary progressive MS (SPMS). Relapsing forms of MS allow for complete or partial recovery from symptoms in between flare-ups and a lesser degree of disability.
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 very rapidly and can lead to death in weeks or months.
Some people with MS may have other health conditions that affect their lifespan. A study found that the most common comorbidities (other health conditions that occur together) 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 of people with MS, and anxiety, depression, and chronic lung disease were each present in 7 percent to 15 percent of those studied. All of these conditions are associated with a decrease in life expectancy.
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 help reduce disease activity for an overall better MS prognosis. Healthy lifestyle habits may also improve your outlook.
Research shows that people with MS who take DMTs have a longer life expectancy than those who don’t. Many DMTs have been approved by the U.S. Food and Drug Administration (FDA) for the treatment of MS. Studies from the National Multiple Sclerosis Society show that DMTs reduce the chance of relapse and slow disease progression and disability. Some DMTs are oral medications, while others are given by injection or intravenous (into a vein) infusions.
Most people with MS take DMTs long term. These drugs help control the immune system, which overreacts and attacks healthy tissue in autoimmune diseases such as MS. If you’ve tried one or more DMTs but continued to have MS relapses or had trouble sticking with the treatment, talk to your doctor about your treatment options.
It’s important to talk openly with your neurologist and caregivers about your treatment goals and preferences. Your doctor can also discuss potential side effects of each treatment option to help you find an effective DMT that works for you. Always get medical advice before making any changes to your treatment plan.
Comorbid conditions should be managed alongside MS. Always report any new or worsening symptoms to your neurology health care team and caregiver. MS can affect different parts of the body, but your symptoms may be due to another condition that needs treatment. Your doctor may recommend medication to manage any other health conditions, along with your MS treatment plan.
It’s also important to be screened regularly for high cholesterol and high blood pressure. Additionally, let your doctor know if you’re experiencing depression or anxiety.
Ask your doctor whether lifestyle changes may improve any risk factors that influence your outlook. Your doctor may advise you to improve your diet to include more healthy foods, 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. Your doctor can give you a referral for a registered dietitian or physical therapist if you need help with lifestyle adjustments.
Your mental health is also important for your overall wellness. Emotional and psychological stress have been found to worsen symptoms of MS. Let your doctor know if you’re experiencing cognitive impairment (thinking or memory problems) or unmanageable stress that interferes with daily activities or your quality of life.
The National Multiple Sclerosis Society has stress management tips for people living with multiple sclerosis and their caregivers.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 217,000 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 a long and healthy life? Help other members by commenting below or starting a new conversation on your Activities page.
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To be clear, MS is one disease. The "types" are not different MS types but are in fact different stages of progression or course, of the same disease and the progression/course, has been labeled as a… read more
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