Living with MS

The weekend should have started on Friday. My sister-in-law is over from France and there was the first gathering of the clan in a local hostelry. I took the sensible option of staying in as there was an even bigger do at our place on Saturday night. My…

Are you ready for a disaster? Wildfires in the wine country of Northern California exploded so quickly that survivors say they didn’t know they were threatened until flames were nearly at their doors. Hurricane Harvey forced more than 9,000 people into Houston’s main evacuation shelter. It…

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 “L.” Symptoms of MS Lhermitte’s Sign Otherwise known as “barber chair sign,” Lhermitte’s sign describes an intense shock-like pain racing down the back…

I love photographs and have them strewn about and framed throughout the house. From grandchildren and goldens, holidays and travels, each holds a cherished memory. I am happiest taking photos and have cultivated somewhat of a hobby doing so. As I have gotten older, I have (gratefully) discarded the…

Editor’s Note: First in a two-part series on readers’ comments about Ocrevus (ocrelizumab). I switched disease-modifying therapies and began treatment with Ocrevus (ocrelizumab) in June. I previously wrote about my reasons for switching, my experiences with the first two doses, and more recently, about any…

Nearly half of multiple sclerosis patients do not always report their relapses to healthcare providers, two surveys indicate. Mallinckrodt sponsored the surveys to better understand patients’ experience with relapses, which are sudden episodes of new symptoms or worsening of existing symptoms. The company presented the survey results at the 7th joint meeting…

Some months ago my wife and I went out for dinner at our favorite sushi place. As is frequently the custom at sushi restaurants, the table setting included chopsticks. No forks. I’ll be painfully honest here: We are both woefully unskilled at using…

Multiple sclerosis (MS) can have severe implications on the lives of European women with the disease, finds a new report, affecting their education, their careers and their relationships. This disproportionate burden of MS in women versus men was the focus of a study, “The Socioeconomic Impact of…

Last week was Invisible Illness Awareness Week, which ran from Oct 14-20. Awareness weeks are designed to bring attention to certain conditions, issues and situations. They are directed at creating consciousness and disseminating information. Sadly, invisible illness is a subject that needs much more attention. Those of…

Life is full of curveballs, with a mix of sliders, split-fingered fastballs, and sinkers thrown in. And, it is the curveballs that can be the hardest to take. Multiple sclerosis (MS) is one of the major “curveballs” thrown into my life; I didn’t see it coming and it…

“We don’t say the ‘D word’ here,” our instructor said. “Just for tonight, let’s all get into downward-facing cat.” The yoga pose wasn’t one I was comfortable in, but then again, so much about yoga makes me uncomfortable — the clothes, the breathy pseudo-spirituality, the jargon, the way…

Since the approval of the first disease-modifying drug (DMD) for MS back in the mid-1990s, another dozen or so have been added as treatment options. But, just as MS affects each patient differently, so do the drugs. Missing has been a tool to follow MS patients and their…

After the first round of symptoms, multiple sclerosis can stay mild without causing major problems for decades, a 30-year British study indicates. Karen K. Chung of the University College London Institute of Neurology discussed the findings at the ECTRIMS-ACTRIMS meeting in Paris, which started Oct. 25 and runs until 28. His presentation was titled “Does…

Last Saturday, I received a FaceTime call from my father who was attending my cousin’s wedding reception. Both he and my mom traveled out of state to attend it, as did the majority of my large extended family. The happy clamor of boisterous chatter made it almost impossible…

Maintaining friendships can be challenging for those with a chronic illness. It may be difficult for friends to understand the changes that take place because of MS. Some changes are quite sudden and visible, others sneak in slowly. Increased fatigue or pain, I find, are most difficult for friends…

Although a smile costs nothing, it can be just what a person needs. Many have encouraged me throughout my life with a smile, thus teaching me how powerful the act of smiling can be. Someone complimented me on my smile this week. I smiled again with a heartfelt…

There’s been some internet buzz recently about the possibility of an over-the-counter allergy drug that helps to repair the myelin that MS damages. The drug is clemastine fumarate, and I suspect that some of that buzz may have been generated by headlines found on Twitter and…

In its work on multiple sclerosis (MS), Biogen has adopted a comprehensive approach that ranges from  drug development to the exploration of real-world data and digital markers of disease. The company will showcase these efforts at the 7th Joint ECTRIMS-ACTRIMS Meeting in Paris on October 25–28. Among its more than 80 presentations at the meeting are updates from its collaboration with Verily and Brigham and Women’s Hospital on using digital sensors that gather data on MS patients between physician visits. Biogen will also share data on the possibility of using such biomarkers to help neurologists in diagnosing and following MS patients — offering information that could potentially help them in making treatment decisions given the variability of the disease in MS patients. The company is also involved in a collaboration with 10 MS centers that aims to generate data collected during routine care. The MS PATHS study includes data from physical examinations, magnetic resonance imaging (MRI) scans, and biological samples. A third and similar project — the Big Multiple Sclerosis Data (BMSD) Network —  is merging data from five MS registries, holding prospective information on nearly 140,000 patients. Taken together, these large collections of high-quality, real-world data will help researchers better understand the disease, and so, increase the potential of new treatment discoveries, Biogen says. The company is also working to discover and develop biomarkers that are not digital that may also advance the understanding of MS and its treatment. One such marker is neurofilament light, which signals damage to neuronal axons. Biogen will share data on how this marker changes over time in MS patients. Among presentations focusing on treatment development, Biogen will highlight new efforts with opicinumab . The treatment — intended to repair damage by triggering remyelination — failed to reach it primary goal in the Phase 2 SYNERGY trial earlier this year. Still,  data indicated that some trial participants did respond to the treatment. At ECTRIMS, Biogen will present an analysis of the SYNERGY data that identifies factors — including specific MRI features — that may be linked to a treatment response.  

It was one of those mornings the day after, when I was moving like a zombie before they became ubiquitous. The night before had been my 30th birthday ― I was now an old bloke. About 20 of us had gathered in an uber-cool West End London restaurant, drank…

Those of us who have MS know that our disease can be invisible. We don’t always stumble when we walk. We don’t always use some sort of an assistive device that would alert people to our illness. So what we often get from those who don’t know better are those…

By the grace of God, I am a naturally positive individual who lends optimism and hope to even the bleakest of situations. Because of this, it is difficult to find me in a situation when my auspicious nature tires; after all, we find out the most…

There’s a difference between being lucky and being blessed. I learned that difference in 1992, after giving birth to our son. Once the doctors counted 10 toes, 10 fingers and we heard the baby’s first cry, I remarked to my husband how lucky we were.

I have every single malady associated with MS. I’m absolutely positive. Because whenever I find out about a new one, or a new study that says we don’t sleep well, or we twitch or tremble, or suffer from this deficiency or that, I’ve got it.

Common Allergy Treatment Restores Protective Neuron Coating in MS, Trial Suggests This is the kind of news we all hope to hear. A treatment that will repair our frayed “wires” and, in doing so, restore some of the function that MS has stolen from us. This is…

Both of my sons — and, if I’m being honest, my husband — love Kraft Macaroni & Cheese. Yes, that horrid stuff that comes in a blue box, the kind that you make with a packet of powdered cheese, milk and butter. Whenever I put some on the table…

  About 10 years ago, in the days before my MS, I had a whole raft of self-imposed jobs. As a new age man, one of these was doing the washing. Yes, this combated the usual bloke’s role in a heterosexual household, but to counter this, I was very…

If you have MS, you’ve probably used a specialty drug. My first was Avonex, which I began to use about 1998. Several others followed. There’s no formal definition of a specialty drug, but these therapies have several things in common. First, they’re expensive. According to the vice president in…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this column about terms starting with the letters J and K.) Symptoms of MS Kyphosis More commonly referred to as “hunchback” or “dowager’s hump,” kyphosis is a term that refers to an outward curvature of…

Some days are easier than others, and some days are just not easy at all. Today I find myself in the latter of the two. It’s Monday morning, and my Sunday was insane: insanely busy, insanely fun, and insanely difficult. While…

I’ve been at a conference the last few days where scholars from around the world are discussing health literacy. It’s a subject much more complicated than just wondering at what level a person might read, or if they can read at all. It’s also a discipline rooted in…