Living with MS

“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…

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…

Sutter Health, a California-based healthcare group, has partnered with the biotechnology company Roche to test a new mobile app that aims to improve monitoring of symptoms in people who have multiple sclerosis (MS). The app, called Floodlight, “may give neurologists access to meaningful, actionable patient data to…

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…

In partnership with @Point of Care, the Multiple Sclerosis Association of America (MSAA) is offering a comprehensive educational video series about multiple sclerosis (MS). The concise, 12-part series — titled “Understanding Multiple Sclerosis” —  features neurologist and MS expert Michelle T. Fabian, MD, and covers…

Mavenclad (cladribine) may surpass Gilenya (fingolimod) in the category of oral disease-modifying therapy (DMT) of choice for the treatment of multiple sclerosis (MS) in Canada, according to a press release. The Canadian healthcare market for MS has grown considerably over the past two years. In November…

EMD Serono is supporting World MS Day, an initiative created by the Multiple Sclerosis International Federation (MSIF) to promote solidarity and raise awareness about multiple sclerosis (MS) worldwide, by joining efforts to make the disease more “visible.” Known as Merck KGaA…

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 Multiple Sclerosis International Federation (MSIF) is encouraging family members, caregivers, and patients affected by multiple sclerosis (MS) to participate in World MS Day today. Created by MSIF and its members in 2009 to promote solidarity and bring hope to those affected by MS, the global initiative takes…

Biopharmaceutical company Celgene has teamed up with the Multiple Sclerosis Association of America (MSAA) to launch a new initiative called MS MindShift: A New View of MS, aimed at educating the multiple sclerosis (MS) community on brain health. Although it’s an “important topic,” brain health “is not…

Corrona has expanded its collaborative multiple sclerosis (MS) U.S. patient registry to include Genentech, the first pharmaceutical company to participate. Established in 2017, the Corrona MS Registry is a real-world U.S.-based registry, developed in collaboration with the National MS Society. Its goal is to help guide treatment decisions based on…

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…

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…

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…

EMD Serono, the biopharmaceutical division of Merck KGaA in the U.S. and Canada, announced the launch of the company’s Multiple Sclerosis Leadership and Innovation Network (MS-LINK), an interdisciplinary research community aimed at improving the care of individuals with multiple sclerosis (MS). The program will combine clinical outcomes…

In my recent conversation with Terry Wahls, MD, creator of the Wahls diet for multiple sclerosis (MS), she said something that resonated with me: “You can’t change your genes, but you can change your gene’s expression.” How true this statement is. However, it was only a few short years ago that Dr. Wahls’ diet protocol, and “food as medicine” philosophy was being met with strong criticism from the medical community. Nowadays, the modified paleolithic diet and lifestyle program she facilitates at the Wahls Institute in Iowa is being touted as the work of a visionary.

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,…

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…

A bird in flight, a field of flowers, a dog surrounded by butterflies, a portrait of a toddler — they’re all part of the artwork by the multiple sclerosis (MS) community done for a Multiple Sclerosis Association of America (MSAA) showcasing program, now marking its 10th year. Through its…