What is Aggressive Onset MS?

Multiple sclerosis is a disease which affects people in many different ways. For some, it can be relatively mild, while for others it can be very aggressive and cause high levels of disability in a short period of time. The more aggressive presentation of MS has been called “malignant MS” or “highly active MS” or simply “aggressive MS.” This type of MS would be different from advanced MS, in that disability accumulates very quickly, up to Expanded Disability Status Scale (EDSS) score 6.0, within the first few years after diagnosis. Patients with aggressive onset MS, or AOMS, may have smaller windows of opportunity for receiving the most effective treatment to slow down the disease.

Studying aggressive onset MS (AOMS)

To date, there are no established criteria or biomarkers by which neurologists can easily identify cases of aggressive MS. To learn more about this type of MS, researchers in New York reviewed the published literature to carefully select a set of criteria with early clinical features and MRI findings that doctors can use to identify these cases. They published their findings in August 2016 in the Journal of Neuropsychiatric Disease and Treatment. The criteria included: 1) two or more relapses in the year after disease onset and two or more gadolinium-enhancing lesions on brain MRI scans; or 2) one relapse if it results in sustained disability (at least EDSS 3.0) along with two or more gadolinium-enhancing lesions.

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Aggressive MS Needs Early Aggressive Treatment

High-Dose Biotin and Progressive MS

For years, research efforts into effective treatments for primary progressive multiple sclerosis (PPMS) have been frustrating. While we have 14 FDA-approved disease-modifying therapies (DMTs) for relapsing MS, there currently are no therapies approved for PPMS. Fortunately, it looks like a new therapy — ocrelizumab (Ocrevus), which is very similar to rituximab (Rituxan) — should be approved in December 2016 for the treatment of relapsing forms of MS and PPMS.

Research does not end there. On September 15, 2016, the International Progressive MS Alliance awarded €12.6 million ($13.7 million in U.S. dollars as of mid-October 2016) to fund three multi-year global projects to accelerate the pace of progressive MS research. Additionally, promising results from a small randomized double-blind placebo-controlled study of high-dose biotin (also known as MD1003) in the treatment of progressive MS were published in the Multiple Sclerosis Journal in September 2016.

What is biotin?

Biotin (or vitamin H) is a water-soluble B-complex vitamin that is found naturally in many foods. It acts as an essential coenzyme involved in energy metabolism and fatty acids synthesis. Data from a small open-label pilot study and the randomized trial referenced above suggest that high doses of biotin have some impact on disease progression and permanent disability in patients with progressive MS.

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High-dose Biotin as Treatment for Progressive Multiple Sclerosis

Lifestyle Choices Associated With Less MS Disability

How do lifestyle, medication, and demographics affect people with multiple sclerosis? Answers to this question are the focus of international, internet-based research conducted by George Jelinek, M.D., and his team from the University of Melbourne, Australia.

In 2012, the research team collected baseline data for the Health Outcomes and Lifestyle Interventions in a Sample of people with Multiple Sclerosis (HOLISM) study. Participants from 57 countries were recruited through social media leveraging MS blogs, forums, Facebook, Twitter, international MS societies, and the primary researcher’s website, https://overcomingms.org. The HOLISM study provides a snapshot of current lifestyle and risk-modifying behaviors of a large international group of people with MS, as well as an ongoing platform for analyzing the association between these factors and disease progression.

Researchers have been analyzing the data collected in 2012 from approximately 3,000 people living with MS and publishing the results in individual articles. Those published to date are listed below. The original research plan includes a 5-year follow-up survey which would allow for comparison of longitudinal data. Updates on the status of that survey are unavailable. This latest article focuses on the associations of lifestyle, medication, and socio-demographic factors with disability in 2,469 people with any form of MS.

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Lifestyle Choices Associated With Less MS Disability and Fewer Relapses

Does Your Neurologist Talk About Exercise?

Exercise is an important part of multiple sclerosis management. Exercise not only helps cardiovascular health, it can increase strength and flexibility, reduce spasticity and fatigue, and improve self-efficacy and mental well-being. Recent research has shown that exercise also can promote remyelination and brain repair in mouse studies.

Exercise: It does a body good

What constitutes exercise may differ dramatically from one person with MS to another. What is an appropriate exercise for me may be dangerous and highly inappropriate for you, or might be sorely insufficient and too easy for someone else with greater physical abilities than either of us. Just as people with MS are unique with our symptoms and disease course, our individual needs for exercise and/or rehabilitation can vary considerably as well. There is no one-size-fits-all when it comes to physical activity.

Does your doctor talk to you about exercise?

I asked a few MS friends if their doctors ever discussed exercise recommendations. The responses ranged from “I would just like for my neurologist to give me the hope of doing exercise but he's already written it off and condemned me to a chair!” to “I don't really expect any from a neuro, but I do expect my neuro to recommend me to a PT/OT that can with help me with that.”

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Should Doctors Talk More About Exercise to MS Patients?

What To Know About Zinbryta

Disease-modifying therapies (DMTs) are important tools in the fight against multiple sclerosis. To date, the U.S. Food and Drug Administration (FDA) has approved 14 DMTs: 13 therapies for the treatment of relapsing forms of MS, some of which are also approved for clinically isolated syndrome; and one therapy, Novantrone, for the treatment of “worsening MS;” however, Novantrone is no longer customarily used in the United States.

In May 2016, daclizumab (under the brand name, Zinbryta) was approved by the FDA as the fourteenth DMT option for people diagnosed with MS in the U.S. In July 2016, Zinbryta was approved for use in Europe. The FDA suggests that because of its safety profile, the use of Zinbryta should generally be reserved for patients who have had an inadequate response to two or more drugs indicated for the treatment of MS.


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What You Need to Know About the Latest MS Drug Zinbryta

What is Benign MS?

Multiple sclerosis is a disease of the central nervous system. There are traditionally four forms of the disease that include relapsing-remitting MS (RRMS), secondary progressive MS (SPMS), primary progressive MS (PPMS), and progressive relapsing MS (PRMS). A 2014 update to the description of the subtypes of MS added clinically isolated syndrome (CIS) to the list and removed PRMS. An unofficial subtype of multiple sclerosis is benign MS.

What is benign MS?

Although there is no universally agreed upon definition of benign MS (BMS), the term is typically used to describe a disease course where patients experience little disease progression and minimal accumulation of disability decades after developing the disease. Benign MS is a retrospective diagnosis that can only be made 10 years or more after disease onset.

Your neurologist may look back on how MS has affected you and determine that your version of MS has been “benign” or fairly mild. Disability in MS is measured by the Expanded Disability Status Scale (EDSS) that is scored from 0 (no disability) to 10 (death). An EDSS 2.0 score represents mild disability in one functional system, such as decreased sensation in all four limbs, and EDSS 3.0 represents mild disability in several functional systems or moderate disability in one system while the patient is still able to walk unassisted.

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What is Benign MS and How Is It Treated?

Ultra Low-Fat Vegan Diet Doesn't Slow Down MS

People who are newly diagnosed with MS are often interested in learning as much as possible about what they can do NOW to fight the disease. In addition to learning about MS and discussing disease-modifying therapy (DMT) with your neurologist, I frequently recommend that people focus on staying as healthy as possible through nutrition and exercise.

In addition to fighting MS with medication, patients may turn to diet, exercise, and alternative medicine to push back on the disease. Several studies have connected exercise to positive patient outcomes including reduced fatigue and improved cognitive function. But research exploring the effects of diet and nutrition on MS is less clear cut. A pioneer on the subject, Roy Swank, M.D., published several papers prior to 1991 discussing the benefits of a low-fat diet in MS patients before DMT were available. Modern day MS diet proponents may also observe subjective benefits of diet for MS patients, but research is difficult and expensive to conduct.

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Low-fat Vegan Diet May Reduce Fatigue But Doesn’t Slow Down MS

Foster a 'Can Do' Spirit to Fight MS

Do you believe you have the power and skills to complete tasks and accomplish specific goals? If so, you have a high level of self-efficacy. People with high self-efficacy may be said to have a “can do” spirit.

Self-efficacy can be influenced by past experience, peer pressure, and physiological factors. Self-efficacy can also influence behavioral choices (e.g., avoiding tasks when belief in our ability is low, or choosing to undertake tasks when self-efficacy is high), affect motivation (e.g., people with high self-efficacy are more likely to persist in order to accomplish a task, whereas people with low self-efficacy might be discouraged and give up sooner), and affect thought patterns and responses (e.g., low self-efficacy can make you think a task is more difficult than it actually is, which leads to poor planning and increased stress).

Multiple sclerosis is a disease that can erode one's independence and lead to lower self-efficacy. MS is often associated with significant reduction in physical activity, which also correlates with lower self-efficacy. Conversely, higher self-efficacy has a positive effect on physical activity and correlates with higher health-related quality of life (HRQoL) and lower rates of depression.

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Build Confidence and Foster a ‘Can Do’ Spirit to Fight MS