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Primary progressive multiple sclerosis (PPMS) is a complex disease that varies between individuals. In other words, not everyone will have the same symptoms or experiences. The rates of progression also vary.
The mysteries surrounding PPMS have generated many myths about this condition. This can create a lot of confusion when you’re trying to research multiple sclerosis (MS) and its primary forms. Learn about some of the most common myths about PPMS here, as well as the real facts.
Myth: There will never be a cure for PPMS
Fact: Research is ongoing for medications
As of 2017, MS isn’t curable. Certain medications are approved by the U.S. Food and Drug Administration (FDA) for relapsing-remitting forms of MS, but but most of these don’t seem to work in PPMS. Recently, one new drug, Ocrevus (ocrelizumab), has been approved for PPMS.
This doesn’t mean that there will never be a cure. In fact, research is ongoing in terms of medications for PPMS, as well as possible cures for all forms of MS. Because genetics and environment are thought to contribute to MS development, research is looking into how to prevent some of these variables from affecting adults later in life.
Myth: PPMS primarily occurs in women
Fact: PPMS affects women and men at the same rate
Some forms of MS tend to occur more often in women than men — sometimes three times as much. Yet according to the National MS Society, PPMS seems to affect both women and men equally in number.
Diagnosing PPMS can be difficult, but you shouldn’t assume you have one specific form of MS just because of your sex.
Some forms of MS tend to occur more often in women than men — sometimes three times as much. Yet according to the National MS Society, PPMS seems to affect both women and men equally in number.
Diagnosing PPMS can be difficult, but you shouldn’t assume you have one specific form of MS just because of your sex.
Myth: PPMS is an elderly person’s disease
Fact: The condition may occur before middle age
The onset of PPMS tends to occur later than other forms of MS. However, there seems to be a misconception that it’s an elderly person’s disease. This may be in part due to the onset of disability being associated with age. According to the University of Rochester Medical Center, the average age of onset for PPMS is between 30 and 39 years of age.
The onset of PPMS tends to occur later than other forms of MS. However, there seems to be a misconception that it’s an elderly person’s disease. This may be in part due to the onset of disability being associated with age. According to the University of Rochester Medical Center, the average age of onset for PPMS is between 30 and 39 years of age.
Myth: A PPMS diagnosis means you’ll be disabled
Fact: Disability rates range in PPMS
Physical disability is a risk with PPMS — perhaps more so than other forms of MS. This is due to PPMS causing more lesions on the spine, which can in turn create gait issues. Some people with PPMS may need assistive devices for walking, such as canes or wheelchairs. The National MS Society estimates that about 25 percent of people with MS need this type of assistance.
Still, this doesn’t mean that you should expect disability after being diagnosed with PPMS. Rates of disability vary, much in the same way as symptoms do. You can help prevent the onset of walking problems by exercising regularly as part of an active lifestyle. Talk to your doctor about other options to help maintain your independence, such as physical and occupational therapy.
Physical disability is a risk with PPMS — perhaps more so than other forms of MS. This is due to PPMS causing more lesions on the spine, which can in turn create gait issues. Some people with PPMS may need assistive devices for walking, such as canes or wheelchairs. The National MS Society estimates that about 25 percent of people with MS need this type of assistance.
Still, this doesn’t mean that you should expect disability after being diagnosed with PPMS. Rates of disability vary, much in the same way as symptoms do. You can help prevent the onset of walking problems by exercising regularly as part of an active lifestyle. Talk to your doctor about other options to help maintain your independence, such as physical and occupational therapy.
Myth: Having PPMS means you have to quit your job
Fact: Working won’t make PPMS worse
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