Columns

“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…

When I think of multiple sclerosis and falls, I tend to think about people who are upright and walking when it happens. I hadn’t considered the risks for people who spend most of their waking hours using a wheelchair or a scooter. Many studies have looked at people with MS…

The storms keep coming. Whenever I think I will land ashore, a hurricane sends me back into the eye of the storm. I want to write; however, I fall short of time and, ultimately, the words to explicate all I am going through. Most writers have interval writer’s block. Emotional…

I’ve met Humpty Dumpty, and he is me. I made that discovery the other night when I had a bad fall. It wasn’t off a wall; it was just off a chair, but it felt like I’d tumbled off Humpty’s high ledge. It shouldn’t have happened. I’ve lived with MS…

#AANAM – Biogen Offers Update on Development Plans for MS Therapies The pharma company that brought you Tysabri (natalizumab) is investigating a new process for treating multiple sclerosis. The treatment looks for something called neurofilament light chain (NfL), a potential biomarker that’s released from damaged neurons.

I was at a church function last Saturday, chatting with the guest speaker and her mother, and I noticed that the older woman was making several trips to the dessert table. It was laden with everything you’d expect to see at a church potluck: banana pudding, pound cake, homemade cookies,…

It was a sunny Lower East Side of Manhattan Sunday morning. The bulbous New York Times was shoved, just about, under my arm. I drank a coffee in the sheltered backyard of a diner after surviving the denizens of the street to get here — this was good shelter.

Dear Doctor, Why is it that you, or at least some of your colleagues, think that multiple sclerosis isn’t painful? Did you skip the med school class where they discussed MS? Are you not a neurologist, or are you a neurologist who doesn’t specialize in MS? Whatever the reason, this “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 “Slurred Speech” from May 14, 2018.

They say that the only certainties in life are death and taxes. While I agree with these two, a third inevitability is capitulation. Why do we have theme parks when we have lives? We have highs and lows and homeostasis in-between. Just when you think it is safe to exhale,…

#AANAM – RRMS Patients Switching to Lemtrada Report Greater Satisfaction with Treatment and Improvements in Quality of Life I’m a self-proclaimed secondary progressive, rather than a remitting, multiple sclerosis (MS) person. But a year after round two of Lemtrada (alemtuzumab), I can agree with this report. Several of my…

Exactly one year ago on this day of writing, I was down and out. This year, I’m not exactly fighting fit, but the same set of circumstances has pushed me the distance. But it didn’t floor me. OK, OK, I’ll stop with the pugilistic metaphors — it’s not exactly…

When I read online posts from people who treat their multiple sclerosis (MS) with vitamins and supplements, I wonder how many of us do that. And if these supplements really help. The people at the Accelerated Cure Project, which surveys those living with MS about things such as this,…

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 “Lhermitte’s Sign…” from May 4, 2018. What is the barber chair phenomenon? This…

I am a positive person with not-so-positive moments. These moments don’t quantify my essence. Nevertheless, they sure try. I work hard to keep the negativity at bay, but I don’t always succeed. As I write, I’m overcome with pain and fatigue. This is not the exception but the…

Ouch! The out-of-pocket cash that people with multiple sclerosis (MS) lay out for their medications increased 20-fold between 2004 and 2016. That information comes from a study recently published on the Neurology website. Looked at another way, monthly out-of-pocket costs for MS meds rose from about $15 to about $309 over 12…

Women with MS Have Higher Prevalence of Sexual Dysfunction, Study Reveals I’m surprised that someone felt it necessary to conduct a formal study of this. A glance at multiple sclerosis (MS) groups on social media, although unscientific, would suggest that this is a common problem. And if you’re going…