Living with MS

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Do you use pain meds to get through day to day life?” from…

At 17, I began a 20-year odyssey with endometriosis. The doctor’s platitudes and disbelief were astonishing and leveled my sense of self. The findings of severe endometriosis served as a painful “I told you so.” My life became a whirlwind of physical and emotional upheaval. For a young woman,…

I have been fighting multiple sclerosis (MS) for seven years now. I’ve changed a lot since getting diagnosed. I’ve become more aware of my body and the ways MS has changed my life. Nothing stopped me from graduating from college, but I’ve still faced many challenges…

I’ve been whinging for months now about struggling on through near-constant urinary tract infections. This week’s joyous occasion was finally having a poo (hurrah), but then not having the energy to do anything about the result (boo). I’d spent something like five hours attacking the problem with my new…

Many people with multiple sclerosis (MS) use vitamin D supplements. I’ve been popping a 2,000 IU tablet of vitamin D3 each morning for many years. And with good reason. Studies show that having an adequate blood level of vitamin D may lower a person’s risk of developing…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Is it an MS Diagnosis or is it something else? ” from July…

My eyes are closed. Both arms are in a loose “X” across my chest. I feel my heartbeat quicken as I lean back. I fall. For a moment in time, I am afraid. But before fear takes over, a dozen hands cradle me instead. A trust fall. This team-building exercise,…

A diagnosis of multiple sclerosis (MS) often leaves patients and their families with many unanswered questions. It can be hard to find information, connect with other patients, and find support. Here are some frequently asked questions and answers about MS: What is MS? MS is an autoimmune disease —…

A new app might make it easier for healthcare providers to assess cognitive function in people with multiple sclerosis (MS). The app was described in the study, “iCAMS: Assessing the Reliability of a BICAMS Tablet Application,” published in the International Journal of MS…

Leading up to Canada’s Oct. 21 federal election, the Multiple Sclerosis Society of Canada is urging citizens to write their local candidates, asking for greater support of those living with the neurodegenerative disorder. Called #MakeMSMatter, the Sept. 4 through Oct. 21 online letter-writing drive is an effort to…

In this column, I take a look at more exciting research from the ECTRIMS2019 conference this month. #ECTRIMS2019 – Ozanimod’s ‘Key Advantages’ May Lead to New First-line MS Therapy: Interview with Neurologist Jeffrey Cohen This year we’ve seen the approval of two new multiple sclerosis treatments in the United…

Sanofi is working with Happify Health to develop an app that addresses the mental health of people with multiple sclerosis (MS) through cognitive behavior therapy. The physical symptoms of MS, such as fatigue and spasticity, are well-documented. But many patients also struggle with bouts of depression,…

“Events, my dear boy, events.” Because of my own political proclivities, I don’t tend to quote old Conservative prime ministers, unless, of course, it’s Winston Churchill. In his semi-youth, he crossed the floor to join the Liberal Party twice: “Anyone can rat, but it takes a certain amount of…

This is the time of year when my wife and I start thinking about getting our flu shots. We’ve already had the pneumonia and the older shingles vaccine and hope to soon update with the new shingles vaccine, Shingrix (recombinant zoster vaccine). These vaccines are OK with my…

I saw a praying mantis this morning. The long, leaf-like oddity caught me off guard. I was transfixed by the beautiful specimen, its prayerful state contrasting starkly with its violent mating ritual. The female is known to eat the head of the male — a shift in temperament at…

J.K. Rowling, the author of the Harry Potter series, has donated £15.3 million — more than $19 million — to the Anne Rowling Regenerative Neurology Clinic to support research, create new facilities, and help develop new treatments for people with multiple sclerosis (MS) and other neurodegenerative disorders.

Two years after the approval of Ocrevus (ocrelizumab), the latest data continue to support the benefits of the so-called “game-changing” therapy in multiple sclerosis (MS), while new insights highlight its neuronal protective effects and safety. Multiple Sclerosis News Today had the opportunity to speak with Hideki Garren,…

Judgment is a social ill that many people with chronic illness must endure. People have said, “You’re not the same person,” “Snap out of it,” and of course, “You don’t look sick.” Most recently, referring to my irritability and need to regroup, someone asked where the old me had gone.

Richard Burt, MD, the chief of Northwestern Medicine’s immunotherapy for autoimmune diseases division, is taking a sabbatical, and the stem cell program he has headed for many years, which treated a number of people with MS, is shutting down. Burt headed a Phase 3…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “When do you tell your employer about your MS?” from Jan. 15,…

Mama said there would be days like this. I just never thought there would be so many. After three days of insomnia, I am heavily fatigued and weary. I wait, bleary-eyed, for signs of pain to appear, watching the sunrise and praying for renewal. As if on cue, the birds…

Imagine that you’re sitting in your 7 a.m. clinical psychology class and fighting to stay awake. Energy drinks were part of my morning routine in college. I usually went to bed around the same time every night, so I couldn’t figure out why I was still tired and…

Cathy Tolk, a multiple sclerosis (MS) patient and a motivational speaker, has opened a website that features her weekly articles, video blogs or  vlogs, inspirational messages, and mentions of two published books. Tolk, who lives in Connecticut, was diagnosed with MS in 1995 after years of bringing joy to…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “How do you feel about journaling? It’s a good way to keep track of…

I recently sent my neurologist a thank-you card. A friend of mine was incredulous and truly baffled at my gesture. “Why would you thank your doctor?” she asked. Why wouldn’t I? I am thankful for my doctor’s wisdom and also her heart. She is an elusive hybrid of extreme intelligence…

Using smartphones and smartwatches to monitor disease course via the FLOODLIGHT app leads to high adherence and satisfaction among patients with multiple sclerosis (MS), results from a pilot study show. The research, “Adherence and Satisfaction of Smartphone- and Smartwatch-Based Remote Active Testing and Passive Monitoring in People With Multiple Sclerosis: Nonrandomized Interventional Feasibility Study,” was published in the Journal of Medical Internet Research. Assessing MS progression commonly requires periodic in-clinic visits, and doctors may miss subtle changes occurring between such visits. Smartphones may be a solution for real-time data collection and better patient monitoring outside the clinic. The Roche-sponsored FLOODLIGHT study assessed the feasibility of using smartphones and smartwatches to assess MS symptoms, including hand function, gait and posture, mood, and cognitive impairment. FLOODLIGHT primarily evaluated adherence and feedback to the smartphone- and smartwatch-based assessments, as well as the participants’ satisfaction, as determined by their impact on daily activities. The study included 76 MS patients (ages 20 to 57; 53 were women) and 25 healthy controls, who were recruited at the Multiple Sclerosis Centre of Catalonia in Barcelona, and the University of California, San Francisco. Most patients (91%) had relapsing-remitting MS. The mean time since symptom onset was 11.3 years, and the mean Expanded Disability Status Scale score was 2.4. The test battery included active tests performed daily, weekly, every two weeks, or on demand for 24 weeks, and passive monitoring, which analyzed sensor-based gait and mobility. Participants were instructed to complete the active tests at roughly the same time every day, and to carry the smartphone and smartwatch with them all the time. Adherence was assessed via the proportion of weeks with at least three days of completed testing, and four daily hours of passive monitoring. Satisfaction was determined through a questionnaire. Clinical evaluations were conducted at the study's start, after 12 weeks, and at the study's end. Brain magnetic resonance imaging scans were taken at the enrollment visit and at week 24 (study's end). Most participants finished the study – 92% of MS patients and 64% of the controls. Reasons for discontinuation included the burden of continuous monitoring and lack of availability for the three required in-clinic visits. Over an 18-month period, from November 2016 to April 2018, most participants performed five to seven active tests per week, including the Two-Minute Walk Test (2MWT). Adherence to both active tests and passive monitoring for the 24 weeks was good, and remained stable over time after week six. In the final week, participants had a minimum of four hours of passive monitoring data over an average of four days. Adherence was higher for passive monitoring than the tests. Data showed that 70% of participants completed all active tests, 75% did all active tests except the 2MWT, and 79% had data collected via smartphone- or smartwatch-based passive monitoring. The longer a person's disease duration, the lower was their adherence. In contrast, disease severity was not seen to impact adherence. Overall scores reflecting satisfaction was 73.7 out of 100 at week 24, having remained stable since week 12. Sixty-one patients reported that the test battery had an at least an acceptable impact on daily activities. Thirty-two had no issue with the active tests, while one-third would rather avoid the 2MWT. A majority, 60%, of the MS patients said they would like to continue using the FLOODLIGHT app to better understand their disease and improve its management. “Persons with multiple sclerosis were engaged and satisfied with the FLOODLIGHT test battery,” the scientists wrote. As such, “FLOODLIGHT sensor-based measures may enable continuous assessment of multiple sclerosis disease in clinical trials and real-world settings.” FLOODLIGHT tests are being assessed in long-term studies with larger patient groups in the CONSONANCE Phase 3b trial of Ocrevus (ocrelizumab, by Roche-owned Genentech) in people with progressive MS still enrolling, contact information is here), and in a global study open to all MS patients with a mobile device, called FLOODLIGHT Open.

Relationships between multiple sclerosis patients and their intimate partners were enhanced when the couple worked together to make lifestyle changes, and to develop skills to improve communication, a study shows. 

New guidelines from the American Academy of Neurology (AAN) recommend that people with multiple sclerosis (MS) keep up with regular vaccinations, including annual flu shots, but be sure to first advise their doctor on medications they are using. The guidelines were published in the journal Neurology, in the report…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum.  This week’s question is inspired by the forum topic “How do you feel about journaling? It’s a good way to keep track…

The out-of-pocket costs for self-administered disease-modifying therapies (DMTs) for multiple sclerosis (MS) patients on Medicare increased more than sevenfold from 2006 to 2016, according to a new study. This was reported by researchers at the University of Pittsburgh in a…