Columns

Users of the disease-modifying therapy Ocrevus (ocrelizumab) share a common complaint: the length of time the infusions take. It may seem petty, but an Ocrevus infusion consumes nearly an entire day. My typical infusion involves checking into the clinic, being screened by the infusion nurse for any changes, taking…

I’ve been living with MS for nearly 39 years and I’ve never seen the notes my neurologist has written during my office visits. My neuro did hand me a thick folder of notes several years ago. It had material dating back to my diagnosis in 1980, but when we…

Cyxone Launches Phase 1 Trial Assessing T20K for MS This trial caught my eye because even though it’s a small, early trial, T20K is a medication derived from a plant. Animal studies have shown that the treatment can inhibit cytokines, substances that mediate inflammation. Cyxone launched the first-in-human Phase…

Even in my able-bodied days, I was hardly Channing Tatum — who is? Model, actor, dancer, singer, and he even has the audacity to be funny. There might not be any real comic book heroes in the world, but he is possibly the closest to an X-Man we’ve got.

I’ve used an electric scooter for nearly 20 years. At first, I only used it when I knew I’d be walking a lot. Now, it’s every day. I used a cane for several years before the scooter. I resisted using both, however, and I’ll bet that many of you who…

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 a frequent reference made in our forums as well as in our columns and articles.

Multiple sclerosis (MS) is a chronic illness accompanied by various symptoms. Depression is one of the most common. Depression is a shape-shifter and affects one’s life in different ways. The dark hole Imagine one week everything is fine. You’re known for being a social butterfly…

More than 15 disease-modifying therapies (DMTs) are available in most high-income countries to treat multiple sclerosis (MS). DMTs come in the form of injectables, infusions, and pills. Some are new, others have been around for more than 20 years. Some have a greater possibility of serious side effects than others. Some DMTs are highly effective at slowing or stopping disease progression; others, not so much. It's a difficult choice to make. So, why are some neurologists making it harder? These doctors are handing their patients a medication "shopping list" and telling them to pick one. I see this topic discussed regularly in social media MS groups. Recently, a woman who needs to switch DMTs wrote that her neuro gave her a "handful of (medication) brochures" and told her to go home and decide which medication she wanted. Really? DMT selection shouldn't be do-it-yourself I've been using DMTs for more than 20 years. I've been on Avonex (interferon beta-1a), Tysabri (natalizumab), Aubagio (teriflunomide), and Lemtrada (alemtuzumab). I always had the final say on which med I wanted to use, but I never had to make that decision alone without guidance from my neuro. That's the way a doctor-patient relationship should work. While the final DMT decision should always rest with the patient, your neurologist has the responsibility to use his or her knowledge of the meds and of you to guide you in your choice. Some factors that you both need to consider are: Is the disease progressing quickly or slowly? Your lifestyle: Do you work full time? Do you have a good support system and reliable transportation? If an injectable DMT is in the mix, can you handle injecting yourself monthly, three times a week, or every day? How much possible risk are you willing to accept in exchange for the potential of a better result? An additional and criticial consideration is whether you can afford the treatment. My impression is that cost is rarely thought of or talked about before most physicians prescribe a medication. I see nothing wrong with asking your doctor how much you can expect to pay out-of-pocket. (Or, for the doctor's office to ask this of your insurance company). If you feel your neurologist doesn't know all of these things about you I suggest that you be proactive and fill in any blanks. The final choice is yours With all of that knowledge, you can probably narrow down the most appropriate DMT candidates for you to three or four. Then it's time for your neuro to clearly explain why those are the best choices and to review the pros and cons of each. Then, and only then, it's time for you to make the final choice. And your decision might be not to use any medication. That wouldn't be my choice, but it might be yours. After all, you're the one who'll be living with whatever choice you make. What has been your experience? Was your neurologist helpful when selecting a DMT or were you given "a handful of brochures" and told to do-it-yourself? How did you choose? You're invited to visit my personal blog at www.themswire.com.

DELIVER-MS Trial Recruiting RRMS Patients to Help Improve Treatment Decision-making What’s the best way to attack multiple sclerosis when it’s first diagnosed? Do you hit it hard and fast using the most effective disease-modifying therapy (DMT), or do you start with a lower efficacy DMT and slowly ramp up?…

A few weeks ago, I told you that I’d made a decision: I had to slow down. I think and talk quickly. I work quickly and drive much too fast for my grandmother’s liking. Basically, everything in my life was fast, and picking up speed with each passing day.

Stranded. Not on a desert island but in an empty hospital ward. Earlier, it had been filled with fellow MSers getting their Ocrevus (ocrelizumab) infusions. I write “fellow,” but as ever, we blokes were in the minority — there were only two of us. Research indicates that more…

Rather than hiding from the storm, it’s better to learn to dance in the rain, as I like to say. Ali Stroker, who plays Ado Annie in the Broadway revival of the musical “Oklahoma,” has learned to dance in a wheelchair. She was recognized this week at the Tony…

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 the Blood Brain Barrier May Thwart MS Progression” from Feb. 9, 2017. What…

A well-known mantra exists in the multiple sclerosis (MS) community. I first heard it after my diagnosis and have since adopted it as my own. “Move it or lose it.” Movement is essential for everyone’s health and well-being. For those of us with multiple sclerosis, it is imperative. Regular activity…

You may have felt what Bethanee Epifani Bryant has felt in a doctor’s office. I think many patients have, but most of us can’t paint the picture of our experiences that Bryant can paint. And she paints it using words. Bryant is a poet. “I sit on the…

FDA and EMA to Review Ozanimod as Possible Oral Therapy for Relapsing MS Another disease-modifying therapy (DMT) is a step closer to gaining approval for use both in the U.S. and in Europe. And that’s good news. The discouraging news, however, is that once again, the approval is being…

“Thank you for sharing” is a clichéd phrase I never expected to use, or indeed have used toward me! However, it is often bandied at the end of these columns by the select few who like my work, so I can’t be too churlish about it. Why write about it…

I worked up a little sweat when I was exercising the other day. It was just a tiny bit on my forehead, but it was something I hadn’t felt in many years. I’ve lived with MS since 1980, and before now, I can’t remember the last time I felt sweaty.

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 “Has anyone tried one of these cooling vests?“ from April 18, 2018. What is…

Our emotional selves are unique to each of us. The catalysts that elicit tears and fears vary. We feel emotions rise and await their eruption. Contrarily, they can catch us off guard. Sometimes a seemingly benign stimulus can invoke strong feelings. I should know better than to assume that anything…

I remember the day like it was yesterday: Sept. 20, 2012. I was fortunate to receive a swift diagnosis — following a couple of tests, my neurologist told me that I have multiple sclerosis (MS). At the time I thought, “Well, let the journey begin.” My name is Stephanie…

Cyxone Nears First-in-human Trial for Investigational Preventive MS Treatment T20K Multiple sclerosis can be treated but it can’t be prevented — at least not yet. But these researchers hope that a substance derived from a natural plant protein called T20K will be able to ease or even prevent MS…

I looked at the road, then west to the horizon. It was the Trans-Canada Highway. I was standing just outside Halifax, Nova Scotia. A 23-year-old intending to hitchhike the length of the Trans-Canadian to Vancouver. I’m English but knew this was a rite of passage for young Canadians.

Did you know that not all magnetic resonance imaging (MRI) exams are of equal quality? Walmart officials know this, and they are concerned that poor exams given to their employees are costing the company money. Because people with multiple sclerosis are likely to have several MRIs over the…

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 “MS Burning Feet and Hands Could Be Erythromelalgia,” from Aug. 14, 2018.

Living with multiple sclerosis (MS) is an education in and of itself. I’ve learned a lot about myself and I am a different person now, nine years after my diagnosis. I hope to learn and grow over the next nine years as MS continues to shape my perspective on life.

The other day, a young woman with multiple sclerosis (MS) shared her worry in a Facebook group that her disease would prevent her from playing with her grandchildren someday. Her concern got me thinking about how I’ve handled my MS and my grandchildren. My granddaughter is almost 5 and will…

Last Monday night, I was strangely in the audience at London’s Comedy Store. At a rough calculation, I have directed about 1,500 shows there, have been in the audience for maybe 20, and even have been on the stage a few times. One doesn’t count, as I was drunkenly…

I rode a recumbent bike for 15 minutes today. That’s a record for me, and it felt great. The bike ride was part of an overall exercise routine that I’ve set up for myself at the gym. It mirrors what I was doing about 15 years ago, when I was…

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 “Has anyone had the stem cell procedure?” from Jan. 11. You’ve no doubt heard…