It’s not something anyone wants to think about, but when you get a diagnosis like 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 know is diagnosed with MS, you start thinking of mortality. One MyMSTeam member summed it up with, “I have a very real fear that MS will shorten my life drastically.”
So what is 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 30,000 people in the United States with MS found they lived six years less, on average, than those without MS.
MS itself is not the cause of death because MS is not fatal. Rather, the symptoms caused by the progression of MS can lead to other conditions that are ultimately fatal. Pneumonia, infections, and falls are common causes of death directly 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.”
There are many factors related to MS prognosis. These include sex, age at disease onset, the level of recovery from the first attack, MS relapses, and central nervous system (CNS) involvement. In general, women with MS have a better prognosis than men, as do people who are younger at the time when MS starts. African Americans are more likely to have a primary progressive form of MS. People who recover completely from their first attack have a better prognosis than those who do not. Infrequent MS relapses and less cerebellar (relating to the brain) and CNS 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 RRMS allows complete or partial recovery from symptoms before relapse, there is less disability associated with it. SPMS, which occurs when someone with a previous RRMS diagnosis has worsening symptoms, indicates a more systemic condition. PPMS does not follow the pattern of relapse and recovery, and more neurological symptoms occur with this condition, so it is associated with the poorest prognosis of all. One member reported feeling guilty when a friend with a more progressive form of MS passed away: “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 PPMS and can lead to death in weeks or months.
MS isn’t the only issue some people are dealing with. Other medical conditions and comorbidities (two or more health conditions at the same time) can affect the disease course.
A study in the journal Patient Related Outcome Measures found the most common comorbid conditions for people with MS were high cholesterol, high blood pressure, gastrointestinal disorders, thyroid disease, anxiety, depression, and chronic lung disease. 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 of those conditions are associated with a decrease in life expectancy (including depression and anxiety).
The slower MS progresses, the better the prognosis will be. The best way to slow MS is to treat it. MS treatments are associated with a delay in the progression of symptoms and an overall better prognosis.
Many drugs can be used to reduce the chance of relapse and the spread of symptoms. Most are oral medications, injections, or intravenous (through a vein) infusions. Most injected medications are types of interferon-beta. This biologic agent helps keep different inflammatory agents in the brain balanced, resulting in slower demyelination (damage to the myelin sheath around nerves). Oral medications are usually immunologic agents that selectively suppress parts of the immune system that aggravate or lead to MS symptoms. More general immunosuppressants may be given in cases of primary or secondary progressive MS. Intravenous drugs may fit into either category. Intravenous infusions are usually given less often than oral or injection treatments because they may require a doctor’s visit to be administered.
Relapses are treated differently than merely slowing the condition. Steroid medications may be prescribed to reduce the inflammation in an affected area. They may be taken orally or delivered as an intravenous solution. Adrenocorticotropic hormone (Acthar Gel) injections may also be prescribed if a person cannot tolerate IV steroids or is unable to travel to a hospital or clinic to receive them.
Marburg’s variant of MS is typically treated with corticosteroids. Although they do not treat the underlying condition, corticosteroids can make symptoms decrease in severity.
Comorbid conditions are usually managed separately from MS treatment. Dietary changes and moderate amounts of exercise are common ways to deal with 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.
Dealing with emotional well-being 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 the positive aspects of your life. Although it might not seem easy to find positive things when you are managing your symptoms, there’s usually something — your pet or a beautiful sunrise — that is good for you right now.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 196,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Worried about your prognosis? Do you have tips for dealing with these fears? Help other members by commenting below or starting a new conversation on MyMSTeam.