It’s not something anyone wants to think about, but when you get a diagnosis like multiple sclerosis, almost everyone does. “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 gets a diagnosis, 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 U.S. with MS found they lived six years less, on average, than those without MS.
Multiple sclerosis itself is not the cause of death, since MS is not inherently 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 the symptoms of MS.
“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 a variety of factors related to MS prognosis. These include sex, age at disease onset, the level of recovery from the first outbreak, 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 of MS onset. African Americans are more likely to have a primary progressive form of MS. People who recover from their first outbreak completely have a better prognosis than those who do not. Infrequent MS relapses and less cerebellar and CNS involvement are also associated with a better prognosis.
The different types of MS have different prognoses. Relapsing-remitting multiple sclerosis (RRMS) typically has a better prognosis than primary progressive multiple sclerosis (PPMS) or secondary progressive multiple sclerosis (SPMS). Since RRMS allows complete or partial recovery from symptoms before relapse, there is less disability associated with it. Secondary progressive MS, which occurs when someone with a previous RRMS diagnosis has worsening symptoms, indicates a more systemic condition. Since primary progressive MS does not follow the pattern of relapse and recovery, and more neurological symptoms occur with it, 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-type MS, sometimes referred to as fulminant multiple sclerosis. 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 can affect the disease course.
One study 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 5 percent to 10 percent of those studied. All of those conditions are associated with a decrease in life expectancy (including depression and anxiety).
Clearly, the slower MS progresses, the better for a prognosis. 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.
There are a variety of drugs that can be used to reduce the chance of relapse and the spread of symptoms. Most are oral medications, injections, or intravenous 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. 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 in either category. Since they may require a doctor’s visit to be administered, intravenous infusions are usually given less often than oral or injection treatments.
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 (IV) solution. Acthar gel (adrenocorticotropic hormone) injections may also be prescribed if a person cannot tolerate IV steroids or is unable to travel to a hospital or clinic to recieve them.
Marburg-type MS is typically treated with corticosteroids. While they do not treat the underlying condition, they 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. You should be regularly screened for depression and anxiety by your doctor. 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, albeit 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. While 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.
Worried about your own prognosis? Have tips for dealing with these fears? Help other members by commenting below or starting a new conversation on MyMSTeam.
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