living with MS

The National Multiple Sclerosis Society has endorsed the North American Registry for Care and Research in Multiple Sclerosis, a collaborative effort involving other multiple sclerosis registries, clinicians, researchers and patients in the U.S. and parts of Canada. NARCRMS is a public-private partnership, bringing together academia, industry, governmental agencies, and nonprofit organizations with an interest in MS. It operates under the auspices of the Consortium of Multiple Sclerosis Centers. It consists of a database of clinical records and patient-centered outcomes, providing clinicians and scientists with a greater and more integrated ability to track the incidence, prevalence and course of MS. Like many registries, NARCRMS includes data collected by physicians, like neuroimaging scans, genetic markers, cognitive assessments and specimen collection, and testing for identification of biomarkers of disease progression. It also adds patient-reported outcomes focused on disease challenges and impacts on daily life. Its goal is to improve the understanding of MS, facilitate multi-level care, and aid in recruiting patients into clinical trials. NARCRMS is the first open-source database to connect MS centers across North America to regional databases by state, region and zip code. To date, NARCRMS has recruited 10 centers, with another three in the process of coming aboard, and has enrolled 113 patients. The registry builds on North American Research Committee on Multiple Sclerosis (NARCOMS), the oldest patient-driven registry in the U.S. using patient experiences to advance MS clinical care and life quality. NARCOMS was created in 1993 by the CMSC. More than 37,500 people had joined the registry as of 2015. Researchers used NARCOMS data on 2014 to report on outcomes in switching treatments, therapy effectiveness, disease progression, co-existing conditions, and other topics that help understand the MS experience.

My journey in life has allowed me to connect with and meet people from all over the world. For this, I am blessed. I’ve met many diagnosed with MS and other chronic illnesses. All of our experiences are different and we have varying levels of support. A little while…

I’m worried about social media. Specifically, I’m worried about the many MS-related groups in the Facebook world. There are general MS groups and there are groups dedicated to specific MS treatments. I belong to several, and though there’s a great deal of useful information in these groups, there’s…

Editor’s Note: Bryan Bickell, a second-round National Hockey League draft for the Chicago Blackhawks in 2004, played his last NHL game as a forward with the Carolina Hurricanes in April 2017, some five months after being diagnosed with relapsing multiple sclerosis. Bickell played on the Blackhawks’ Stanley Cup-winning teams in…

  When a friend or loved one is going through a tough time, it’s hard to know how best to help. Do you help carry the burden? Would it be better to offer support from a distance and give the person space? Life can be hard and awkward and…

Shooting the breeze after work has been part of my professional life for 27 years. We’re all winding down, yes, but I’m actually still working. New ideas, niggles, gossip are thrown together over drinks. True, many of the younger generation’s beverages these days are non-alcoholic, so they tend not…

Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with the second of two columns about terms starting with the letter “M.” Symptoms of MS Marcus Gunn pupil This is a sign of emerging MS that may be discovered during what is known as the…

I find it incredibly ironic that the day after we pause to give thanks for whom and for what we have, we are breaking down doors and fighting one another in the name of Black Friday. While easy to proclaim in the fervency of the season among family…

Multiple sclerosis patients who adhere strictly to their medication pay more but stay healthier in the long run than those who don't, a study found. Researchers at Liberty University College of Osteopathic Medicine in Lynchburg, Virginia, analyzed data from 2004 to 2013, including electronic health records, insurance claims and self-reported medication adherence. They based their assessment of health outcomes on inpatient admission, emergency room visits, outpatient appointments  and healthcare costs. In total, 681 participants answered questionnaires about medication adherence and disease outcomes, including the Multiple Sclerosis Impact Scale and the Kurtzke Expanded Disability Status Scale. Also used was the Treatment Satisfaction Questionnaire for Medication to assess satisfaction with the medication taken. Patients who took their medicines most rigorously reported 14 percent less severe physical impact of MS, and 17 percent less severe psychological impact than those with low adherence. These patients also reported a 12 percent decrease in disability level, and believed their treatment plan was 7 percent more effective. However, the total overall costs were higher for patients who adhered to their doctor's orders. The researchers said it's more difficult to detect improvements in health outcomes for MS than for other chronic illnesses. This is partly because the only test for changes in disease status is brain imaging, which is expensive and not done routinely. Furthermore, brain imaging only detects new lesions following a relapse, which cannot be compared to previous or future imaging in a quantifiable way. In fact, no simple tests exist for measuring disease severity in MS as there are in other chronic diseases, making it difficult to determine whether treatment benefits justify their cost.

Though I don’t always use it, I take my cane with me every time we go shopping. I can still shuffle to the cart pickup and drop-off without it and the cart doubles as my walker. Canes can be clunky, aren’t easily stored, and I simply…

  We all have heard that physical activity is important for maintaining health, strength and well-being. It may be even more important for people with MS. Exercise has been shown to improve balance, strengthen brain connections, improve sleep, reduce pain, help…

Well, 460.75 miles (741.5 km), to be exact. When I wrote about April Hester in late September, the headline on my column was “She Has MS and She’s Planning to Hike 500 Miles.” Well, she did it, hiking the Palmetto Trail from Walhalla, in the South…

A diet rich in vegetables and low in protein reduced inflammation in multiple sclerosis (MS) patients by modulating the gut microbiome and promoting bacteria that helps control a hyper-reactive immune system. The study reporting the findings, “Immunological and Clinical Effect of Diet Modulation of the Gut…

Exposure to certain gut bacteria at a young age may cause multiple sclerosis (MS) and fuel its progression, a new mouse study shows. The study, “Gut dysbiosis breaks immunological tolerance toward the central nervous system during young adulthood,” appeared in the journal Proceedings of the National…

I can’t believe Thanksgiving is only a few days away. Time truly passes quickly. The holidays are bittersweet for me; I experience both joy and unrest. I believe there are others who can relate. The holiday season can be stressful and I always try to pace myself. In…

It’s that time of year again. The time of year where I keep seeing posts on MS social media posts asking, “should I get a flu shot?” In my honest opinion, yes, definitely! There are certainly different opinions about this, but I think that my opinion is the…

Maryland special education teacher Ingrid Hanson says that since she was diagnosed with multiple sclerosis five years ago, she’s developed a better understanding of her students’ needs and the importance of teamwork. Flavia Nelson helps treat MS in the Hispanic community in Houston. Flavia Nelson, an MS specialist at…

The road to living a grateful life is not always a smooth and paved one. There are curves and roadblocks that can send any thoughts of gratitude far off into the distance. Life is constantly changing…

MMJ Hires Lead Investigator for Phase 2 Trials of Medicinal Cannabis to Treat Progressive MS The real news here is what hiring a lead investigator means. It means that Phase 2 trials of a medical marijuana product to treat MS pain and spasticity are closer to beginning.

An estimated 947,000 people in the U.S. have multiple sclerosis (MS) — more than double the long-accepted figure of 400,000 — according to a newly completed study organized and funded by the National Multiple Sclerosis Society (NMSS). “This is definitely not what we expected,”  Nicholas G. LaRocca, vice…

Because I come from a retail family — one that, for decades, put in long hours behind cash registers and in stock rooms — Christmas is not a holiday we particularly look forward to arriving. We enjoyed it, when the day came. But often in my youth, we were…

Thanksgiving is just a few days away, so I thought it would be a good time to repeat a few of my airline travel tips and add a few new ones. Get the wait-time app Needless to say, you need to get to the airport early on busy travel…

Anniversaries often invoke reflection about the beginning, the journey, and where we now find ourselves. With luck, lessons will have been learned from the invariably good and bad experiences that couple any passage of time. In November 2010, I sat, eyes firmly affixed, as my neurologist read my…

There is often alarm and confusion about the JC virus, how we get it, and what it means to people with multiple sclerosis. This is my quick primer to help address these questions in a very basic way. What is the JC virus? The first person identified with this…

Face it: Understanding MS isn’t easy — even if you have it. There’s no known cause, no cure, no predictability in progression, and while there are common symptoms and manifestations, they affect everyone differently. Some symptoms come and go with no rhyme or reason and…

A physiotherapist-supported exercise program using Nintendo Wii may be a feasible and cost-effective way of helping  people with multiple sclerosis (MS) be more physically active, researchers reported after performing a small pilot study. While findings showed some evidence that people improved — both in terms of self-reported health, gait and balance measurements — researchers underscored that more data needs to be gathered on the intervention’s effectiveness, as the study mainly intended to determine if such a program was feasible. Researchers at the Bournemouth University and Poole Hospital NHS Foundation Trust, both in the U.K., argued that a physical activity intervention using active gaming at home may overcome the many challenges MS patients face when attempting to be active. Barriers to it could be physical, but psychological factors, such as fear, embarrassment, or lack of confidence, can also prevent patients from attempting to increase their activity levels. Moreover, practical aspects — such as transport and cost — can hinder people from joining interventions. In the report, “Mii-vitaliSe: a pilot randomised controlled trial of a home gaming system (Nintendo Wii) to increase activity levels, vitality and well-being in people with multiple sclerosis,” researchers explained they used data generated in earlier Nintendo Wii studies to design an improved intervention program. Earlier studies showed that behavior change techniques, including motivational interviews and problem solving, would likely improve the impact of an intervention. These early studies also highlighted the importance of considering the functional levels, environment, and preferences of individual patients when prescribing a Wii-based program. The study (ISRCTN49286846), described in the journal BMJ Open, shows that among the 30 people who signed up, only two dropped out because of medical reasons. Patients either received the 12-month intervention, called Mii-vitaliSe, directly or after a six-month waiting period. Those on the waiting list group were given six months of intervention. Patients, who had low levels of physical activity when the study began, were instructed as to the benefits of physical activity and on how to use the Wii. During the personalized intervention, participants had access to regular support from a physiotherapist and were provided with a personal activity workbook, which aided participants in setting goals and monitoring progress, among other things. They were also asked to keep a log to track their activity, which showed an average use of the Wii two times per week, for 27 minutes each day. Results showed that patients who started the intervention immediately tended to report better physical activity levels, and better physical and psychological well-being. They also had numerical improvements in gait and balance. While no severe adverse reactions were seen, participants reported pain and worsening of scar tissue after some exercises, for which they received follow-up advice and care. The team also identified several problems or difficulties, including wrongly completed questionnaires, that will allow them to improve measurements once they launch a larger study. "Our study is the first to report on home-based use of the Wii for people with MS in the UK. Overall, findings from this study are promising and support proceeding to a full-scale trial of effectiveness and cost-effectiveness. We will refine the trial design, aspects of the intervention and finalize outcome measures in the light of our experiences from this pilot study" the researchers wrote.

, Spring has always been my favorite season. There is something about flowers blooming, grass growing and the germination process that invigorates me. Spring reminds me that a new season is coming and it ignites hope. I am discovering that autumn deeply resonates with me as well. When I…

The MS load we carry is heavy. Some of us, unfortunately, must carry it alone. But many of us are fortunate to have someone with whom we can share the weight. It’s National Family Caregivers Month and a new survey shows just how heavy that load can…

Myelin-producing Brain Cells Regenerated Using Stem Cells in Early Study We know that when the myelin coating of our nerve axons is destroyed, MS symptoms result. So a process that halts or reverses that destruction is the goal of a lot of MS research. This is a…

Merck’s Mavenclad (cladribine tablets) is now a recommended treatment for British adults with highly active multiple sclerosis (MS), following the issuance of a final appraisal determination by the country’s National Institute for Health and Clinical Excellence (NICE). The therapy — given at a dosage of 10 mg — received the…