I love getting together with family and friends, volunteering at the golden retriever rescue, attending events and keeping my calendar full. It is fulfilling to make plans, but as many of you with MS know, it is a paradox. The very plans that bring hope and happiness also…

Many of you are considering making the switch to Ocrevus (ocrelizumab) as your disease-modifying therapy for multiple sclerosis. This is a switch I made recently. There are so many questions and unknowns about how this treatment might help me, and I’m trying to…

Tecfidera (dimethyl fumarate) can be a suitable replacement therapy when Tysabri (natalizumab) is discontinued, keeping low levels of disease activity in patients with relapsing-remitting multiple sclerosis (RRMS), according to a report published in the Journal of Neurology, Neurosurgery & Psychiatry. Several studies have demonstrated the effectiveness and…

Striking similarities between patients with multiple sclerosis and a type of schizophrenia suggest the disorders are related, according to a review of a number of studies. Dr. Boris M. Arneth wrote the article, “Multiple Sclerosis and Schizophrenia.” It was published in the International Journal of Molecular Sciences. MS…

It took two years and many doctors to finally receive my MS diagnosis. Frequent painful sensations, such as burning, itching, stabbing, and tingling in my arm and shoulder, led my providers and me on a wild-goose chase in search of other problems. When my speech and balance were…

A Phase 2b trial assessing the experimental retroviral-targeting treatment GNbAC1 in patients with relapsing-remitting multiple sclerosis (RRMS) failed to meet its primary goal of reducing brain lesions and other signs of brain inflammation within six months. But researchers at GeNeuro and Servier — the two European companies that jointly developed the drug…

I live at the beach, but I can’t get onto the beach — not easily, anyway. My MS means that I need to use a beach buggy; sort of an electric wheelchair with super-big tires, to get around on the sand. For others who are not as fortunate as…

A substance that the pancreas secretes can promote the regeneration of the protective nerve-cell coating that is damaged in multiple sclerosis, a mouse study shows. The substance is fibroblast growth factor 21, or FGF21. It promotes remyelination, the renewal of the myelin sheath protecting the central nervous system, according to the…

The European Commission has approved Merck KGaA’s Mavenclad (cladribine tablets) to treat highly active relapsing forms of multiple sclerosis (MS). The Aug. 25 decision in Brussels marks the first approval of a highly efficient oral short course therapy for MS in Europe. Mavenclad has been shown to harness disease activity for…

Sometimes the nerve pain caused by MS reminds me of a pinball machine. With the slap of the paddles the ball surges, bouncing sporadically, bells ringing, lights flashing; then the ball quietly comes to a stop and all of the commotion is silenced until the next slap. The sharp…

Horseback Riding Plus Standard Care Can Help MS Patients Improve Balance, Other Symptoms Absolutely, it can. I don’t need to read this study to know that because I’ve been there, done that. About five years ago, at 64, I got back on a horse for the first…

Beth Kantor, 42, now knows what it really means to get down in the dirt. For the past four years, she’s volunteered as a first-aid assistant at the annual Twin Cities MuckFest, a fundraising event that the National Multiple Sclerosis Society organized in suburban Minneapolis. But this year, Kantor decided it…

Alkermes is funding a Phase 3 clinical trial evaluating the effects of its ALKS 8700 therapy on the gastrointestinal tracts of relapsing-remitting multiple sclerosis (RRMS) patients, compared to Tecfidera (dimethyl fumarate), according to a news release by the National Multiple Sclerosis Society. ALKS 8700, an orally administrated form of monomethyl fumarate, is still…

Our bodies are amazing creations, lovingly handcrafted by an infinitely powerful and creative God, and I never get tired of learning facts about how they work. For instance, did you know that 25 percent of adult bones are in the feet? Or that more bacteria are found…

Having not stood on a stage and attempted stand-up for some 30 years, I’m not in the habit of writing jokes for myself. Obviously, these days, I’d be a sit-down comic anyway, but I think my opening line would be a doozy: “As I self-catheterize, I’m probably the…

I’ve just added an app to my iPhone that’s designed to track how I’m doing day-to-day with my MS. Not only can the data it collects be useful to me and to researchers, the app also is fun to use. The app is called elevateMS. It’s…

Omega-3 fatty acids might reduce inflammatory processes by boosting a mechanism that cleans out dysfunctional or unnecessary proteins in a certain type of immune cells, according to a study published in the journal Autophagy. These insights indicate that omega-3 supplements might be beneficial for certain multiple sclerosis (MS) patients,…

Topas Therapeutics and Eli Lilly and Company are teaming up to develop compounds that could be used to treat inflammatory and autoimmune diseases, such as multiple sclerosis and diabetes. The compounds, based on a Topas technology platform, will be aimed at restoring immune tolerance. Immune tolerance refers to the immune system being unresponsive to certain antigens — for instance, the body’s own proteins. Without immune tolerance, the body can generate an excessive immune response that prompts the immune system to attack healthy organs or tissue — a process called autoimmunity Under the multiyear agreement, Topas will receive research and development funding. It will also receive financial rewards from the success of any drug developed under the collaboration. The agreement will give Lilly the option to license all therapies created under the collaboration, and to develop them further. "We are excited to be working with Lilly to generate drug candidates using our proprietary technology," Timm Jessen, the CEO of Topas Therapeutics, said in a press release. "We expect this work to support the value of our approach" of triggering immune tolerance against antigens, he said. The fact that an important pharmaceutical company like Lilly is interested "in our technology, we believe, supports the strong commercial potential of our work." Topas develops compounds against autoimmune reactions — that is, situations in which the immune system attacks healthy parts of the body. It is already developing treatments for multiple sclerosis, type 1 diabetes, celiac disease, and other autoimmune disorders. While the majority of such therapies try to shut down the immune system, Topas’ approach is to trigger antigen-specific immune tolerance. This allows the body to regain control over an excessive immune response, while sparing the body's normal immunity. Topas links its compounds to tiny nanoparticles that liver sinusoidal endothelial cells can absorb. The liver cells are the first place where immune T-cells can learn what the body should not fight against. In studies of mice with multiple sclerosis, a single injection of nanoparticles containing peptides found in neurons triggered a potent protective effect, improving the disease's symptoms and blocking its progression. Peptides are components of proteins. "Lilly is committed to be an innovation leader in immunology," said Dr. Thomas F. Bumol, senior vice president of biotechnology and immunology research at Lilly. "Topas has a very novel approach to immune tolerance induction, which we would like to see successfully applied to certain disease-relevant antigens. We look forward to working together with Topas on their unique platform."

In this chaotic world in which we live, it is hard to be still, to sit with nothing but our thoughts. There is always something to worry about or preoccupy our minds that never allows us to rest in the present. As I sit on the patio and write,…

Advocacy comes in many forms, and recently I wrote about what advocacy by individuals might look like. The other type of advocacy we have going for those of us with multiple sclerosis is the work done on our behalf by a large number of nonprofit organizations. Let…

Therapeutic horseback riding, also known as hippotherapy, when combined with standard care regimens significantly reduces fatigue and spasticity in multiple sclerosis. It also improves balance and quality of life, according to a German study. Hippotherapy takes advantage of a horse's natural movements to develop a patient's muscle tone and improve breathing, while strengthening the torso muscles. Horseback riding also improves balance control, coordination and gait, while boosting a patient's social communication skills, which can benefit self-esteem. “Hippotherapy as a complementary treatment can be defined as one-patient-one-horse physiotherapy treatment with and on the horse,” researchers wrote. Team leaders Vanessa Vermöhlen and Petra Schiller of the University of Cologne evaluated the benefits of half-hour weekly sessions of hippotherapy in combination with standard care. They randomly assigned 70 MS patients with lower limb spasticity to either an intervention group that did 12 weeks of hippotherapy, or a control group that received only standard therapy. The team evaluated the impact therapeutic horseback riding had on balance, measured by the Berg Balance Scale (BBS). They also measured its effect on other multiple sclerosis symptoms and signs, including fatigue, quality of life, pain, and spasticity. Overall, the team found that those who received hippotherapy plus standard care improved their BBS scores by 4.8 points after six weeks of therapy, and 6.4 by the trial's end. These increases were significantly higher than those achieved by the control group (2.9 points at six weeks and 3.1 points at 12 weeks). Although this represents a difference of only 3.3 points after 12 weeks, it still reflects a relevant change in patients' balance control capabilities, the authors said. In addition, the researchers also recognized significant improvements in fatigue, spasticity and quality of life of those undergoing hippotherapy plus standard care compared to those on the control group. The observed beneficial effects of hippotherapy validate previous reports that showing that activities with horses could help adults and children improve their balance, gait and psychomotor abilities.

A multiple sclerosis study will collect information about patients' movement performance and symptoms from their smartphones, Novartis has reported. The study is aimed at evaluating in real time the daily challenges of people living with MS. The results may help researchers develop new ways to measure treatments' effectiveness, the company said. Novartis is partnering on what it has dubbed the elevateMS study with Sage Bionetworks. The non-profit research organization is developing new predictors of disease to accelerate health research. A cellphone application will allow MS patients to send information about their situation from anywhere. The app will use sensors to gather information on patients' movements. It will also assess functional performance tasks that participants engage in. Patients can also fill out questionnaires with the app. A division of Apple called the Apple ResearchKit platform developed the app. Those interested in participating in the study can download it here. The elevateMS app allows a smartphone user to register important features of their disease. It includes a symptom tracker tool that allows users to record their overall wellness. They can also get an overview of what's been happening to them on an activity dashboard. Patients, neurologists and disease advocates gave Apple's app team input that helped with the design. "As physicians, we always want to know how our patients with MS are doing on the treatments we prescribe," Dr. Stanley Cohan, medical director of the Providence Multiple Sclerosis Center in Portland, Oregon, said in a press release. "With the elevateMS app, study participants can frequently document their symptoms in a personal health story," said Cohan, one of the scientific advisors to the study. "In turn, this data may provide researchers with new ways to look at disease progression and treatment effectiveness." The elevateMS study is open to MS patients 18 years old or older in the United States who own a smartphone. Additional information about it is available at www.elevatems.org.

In the video game “Tetris,” players fit falling puzzle pieces together in order to create the most complete picture. As the game continues, the pieces fall faster. Creating order and cohesion out of chaos is necessary, as it is a common human desire. I never liked “Tetris,” but…

Footwear and shoes and journeys have been in my info stream (and on my mind) a lot lately. First, I stumbled onto a very fine column about shoes and MS written by Jennifer Powell (Exchanging a Sole for a Soul). Her essay resonated…

Nortis, a Seattle-based biotech company, has received a $688,000 grant by the National Institutes of Health to create a living, 3-D model of the human blood-brain barrier that will be used for laboratory testing to accelerate drug development and lessen the likelihood of failure in clinical trials. This grant provides funding for a third year of a Small Business Innovation Research (SBIR) award given to Nortis by the National Institute of Neurological Disorders and Stroke (NINDS), a branch of the NIH. SBIR provides grants to U.S.-based small businesses to do federal research and enable the commercialization of technology. The blood-brain barrier is a tissue barrier that only allows certain molecules to pass from blood vessels into the brain. It is a protective mechanism to prevent the entry of foreign bodies and infection-causing organisms in the brain. Researchers are trying to find ways of delivering medications across this barrier, to reach brain tissues to treat diseases that include multiple sclerosis. "Understanding how drugs are transported across the blood-brain barrier and interact with the brain presents a significant scientific challenge," Thomas Neumann, CEO of Nortis and principal investigator on the project, said in a press release. "More predictive preclinical models based on human tissue are urgently needed to reduce costs and minimize clinical trial failures," he added. "This grant will help us develop new in-vitro alternatives to traditional pharmaceutical drug development testing on laboratory animals."

Chronic stress and inflammation in the brain can cause multi-organ dysfunction including severe gut failure, mediated by a newly identified nerve pathway in animal models of multiple sclerosis, a Japanese study shows. MS is an autoimmune disease caused by CD4+ T-cells that cross the blood-brain barrier protecting the central nervous system. This inflames and stresses the brain and spinal cord. In previous studies, a team led by professor Masaaki Murakami of Japan's Hokkaido University showed that these cells could cross the blood-brain barrier in specific sites. These entrance sites depend on brain regional activation, which was found to be triggered by specific nerve interactions — a mechanism the team called gateway reflexes. In collaboration with other Japanese researchers and a team from Germany, the project aimed to address the potential correlation among chronic stress, brain inflammation and organ failures in MS. Using mice with MS-like disease — the experimental autoimmune encephalomyelitis model — researchers found that animals that had autoreactive CD4+ T-cells and which were exposed to stressful conditions developed severe symptoms such as gastrointestinal failure, or even death. Detailed analysis of the animals' brains showed that in stressed mice, CD4+ T-cells accumulated in two specific sites in the center of the brain around blood vessels. This event would cause inflammation around those vessels, and activation of a nerve pathway that is commonly turned off. This switch led to gut dysfunction, bleeding and failure. "These results demonstrate a direct link between brain micro-inflammation and fatal gastrointestinal diseases via the establishment of a new neural pathway under stress," Murakami, the study's senior author, said in a news release. Researchers were able to prevent gut symptoms by inhibiting inflammation in the brain or blocking the nerve pathway responsible for driving the signals from the brain to the gastrointestinal tract. "Micro-inflammation in the brain is also seen in Alzheimer's disease and Parkinson's disease," Murakamai concluded. "So it's of particular interest to investigate possible connections between brain micro-inflammations and organ dysfunctions, including those within the brain itself, in those patients."

Brain donation for multiple sclerosis research optimizes the chances that a cure might be discovered. It might result in a vaccine or other preemptive strike to prevent the disability from starting in the first place. As addressed in a previous column, there is a shortage…

“The very beating of your heart has meaning and purpose.” This is a quote from Andy Andrews in “The Butterfly Effect.” I have referenced this quote on several occasions. It speaks volumes because it affirms that we are here on purpose, not by chance. I did an…

MS drug manufacturers are in the sights of two members of Congress The companies are Bayer, Biogen, EMD Serono, Novartis, Sanofi Genzyme, Teva, and Roche. U.S. Reps. Elijah Cummings and Peter Welch, two Democrats who sit on the House Committee on Oversight and Government Reform, are concerned about what they're calling dramatic price increases for some MS drugs produced by those companies. In a news release, the congressmen say the price hikes have come "without warning, cause, or justification." They've sent letters to the companies seeking information about their profits and expenses. The letters also ask for documents about pricing strategies, patient assistance programs, and drug distribution systems. Cummings and Welch point to an American Academy of Neurology study of drug prices as evidence that some pharmaceutical companies appear to be increasing the prices of their older, less expensive drugs to bring those prices in line with those of the newer, more expensive DMTs that are available today. This kind of practice is known as “shadow pricing.” The congressmen refer to this study as being a bit dated, as it was published in May of 2015. It reviews the published prices of nine DMTs over a 20-year period, ending in 2013, and shows that prices for those older, first-generation DMTs increased at an annual rate that was five to seven times higher than general prescription drug inflation. In their news release, the lawmakers also referred to a report from the National Multiple Sclerosis Society that included a chart of drug price increases since the approval date for each drug.

Merck’s Mavenclad tablets significantly improve quality of life among relapsing multiple sclerosis patients while reducing the number of relapses, according to new analyses of previously unpublished data from clinical trials assessing the drug. This new data, published in the Multiple Sclerosis Journal, come just as the European Commission ponders whether to approve the once- rejected therapy to treat relapsing forms of MS. Its decision is expected later this month, seven years after a perceived increased of cancer risk led the European Medicines Agency (EMA) to block Mavenclad. In 2011, the U.S. Food and Drug Administration (FDA) rejected the medication, forcing its eventual withdrawal from the Australian and Russian markets, where it had already been licensed. For the study, researchers at Queen Mary University of London used data obtained from the EMA through a Freedom of Information request. They analyzed data from the Phase 3 CLARITY trial, which compared Mavenclad to placebo. The trial's 1,326 participants completed a quality-of-life questionnaire that focused on disease aspects such as mobility, self-care, usual activities, pain or discomfort, and anxiety. After two years, those on Mavenclad had significantly improved their quality of life compared to the control group, particularly in terms of self-care. Mavenclad also helped mobility, which might be related to its ability to prevent relapses and delay progression, researchers said. While researchers assessed quality of life using two different questionnaires, patients had only completed one in sufficient numbers to allow for a solid analysis. The other quality-of-life tool provided researchers with numerically positive results, but the low number of responses made the result difficult to interpret. This wasn't the first time QMUL researchers have contributed in this way to knowledge of Mavenclad in MS. In 2015, they used a Freedom of Information request to obtain data showing that Mavenclad was not related to increased cancer risk. “Cladribine seemed to have such excellent potential as a treatment for MS that we thought it was tragic the development program was shelved, and significant parts of the clinical trial data remained unpublished,” study leader Klaus Schmierer, a neurologist at both QMUL and Barts Health NHS Trust, said in a press release. “In addition to the drug being highly effective, well tolerated and safe as far as short-term studies can show, we now know it also improves patients’ quality of life. The new results seemed so clear, we felt it was extremely important to publish and share these data." Mavenclad has now been studied in some 2,700 patients with relapsing MS in the Phase 3 trials CLARITY, CLARITY EXTENSION, and ORACLE-MS, as well as the Phase 2 ONWARD trial, and the ongoing long-term study PREMIERE. The treatment differs from most other oral MS therapies in that a short treatment course — a maximum 20 days — triggered effects that were upheld for two years. Studies of Mavenclad’s mechanisms suggest the drug gets such results by resetting the immune system. In June 2017, the EMA's Committee for Medicinal Products for Human Use urged the European Commission to approve Mavenclad. Merck also plans to seek U.S. approval for its therapy and is now in talks with the FDA about Mavenclad's future.