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Primary Progressive MS: Myths vs. Facts

Medically reviewed by Deborah Weatherspoon, PhD, RN, CRNA, COI on April 19, 2017Written by Kristeen Cherney on March 14, 2017
myths and facts of PPMS

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.

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.

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.

Myth: Having PPMS means you have to quit your job

Fact: Working won’t make PPMS worse

It’s a myth that you have to stop working just because you have PPMS. Some symptoms can make working difficult, such as fatigue, cognitive impairment, and walking problems. But most people with PPMS can at least work part time without any significant issues. It’s true that PPMS may result in more work-related challenges compared to other forms of MS. But that doesn’t mean everyone with the condition has to stop working.

If you have safety concerns related to your job, you may consider talking to your employer about possible accommodations. Your doctor may also provide recommendations to help make working easier with PPMS.

Myth: No medications help PPMS, so you should investigate natural remedies

Fact: There is one new medication approved for PPMS and natural MS treatments aren’t necessarily safe

Until recently, no FDA-approved medications were available for PPMS. However, on March 28, 2017, a new drug called Ocrevus (orelizumab) was approved for relapsing and PPMS. In a study of 732 participants treated with Ocrevus, there was a longer time before disability worsened, compared to participants given a placebo.

In addition, your doctor might prescribe other types of drugs that can help alleviate symptoms. For instance, an antidepressant may alleviate depression and anxiety, while muscle relaxers can help with occasional spasms.

Some turn to natural remedies in the hopes of finding one that can help treat their symptoms. Research is ongoing into some of these methods, such as cannabis, herbal treatments, and acupuncture. However, currently there’s no evidence that these are safe or effective for any form of MS.

If you do decide to try out natural remedies, ask your doctor first. This is especially important if you already take prescription medications.

Myth: PPMS is ultimately an isolating disease — no one will understand what you’re going through

Fact: You’re not alone

The National MS Society estimates that about 400,000 Americans “acknowledge having MS.” Nearly a quarter have progressive forms of the disease. Thanks to increased discussion about MS, there are more support groups than ever. These are available in person and online.

If you don’t want to discuss your experiences with others, that’s okay. You might instead consider talking with a counselor or a loved one. This can help prevent the feelings of isolation that many people with PPMS face.

Myth: PPMS is deadly

Fact: PPMS is a progressive disease, but not necessarily fatal

Cognitive and mobility issues, combined with the lack of cure for PPMS, have given way to the myth that this condition is deadly. The fact is that while PPMS progresses over time, it’s rarely fatal. The National MS Society reports that the majority of those with MS reach average life spans.

Lifestyle changes can significantly improve your overall quality of life, as well as help to prevent complications from PPMS.

CMS Id: 117292