living with MS

I recently started writer David Sedaris’ MasterClass, and one piece of advice he keeps reiterating is the importance of keeping a diary, a daily record of your doings and dealings in this world. It’s a habit I’ve fallen out of, so I bought a stack of Moleskine cahier journals…

I’d just gotten out of bed the other morning and was headed to the bathroom using just one cane when I tried to step over a dog toy on the floor. I went down slowly onto the carpet, so it was really no big deal. No harm, no foul, but…

I have long preached the merits of acceptance. In embracing my MS, I have mitigated much of the accompanying fear. This modus operandi has enabled me to live alongside my disease as opposed to clashing with it. While ideal, it is becoming increasingly difficult to follow my advice. Two…

The Multiple Sclerosis Association of America (MSAA) teamed with Wondros, a creative production company, to launch COVID-19 and MS Pathfinder, an online platform offering the multiple sclerosis (MS) community accurate and regularly updated information to help in safely navigating the COVID-19 pandemic. Topics covered range from managing MS symptoms…

The ongoing COVID-19 pandemic is disrupting vital care and support for those with neurological disorders like multiple sclerosis (MS), according to a recent report from the Neurological Alliance in the U.K. The report is based upon survey responses from over 1,600 people with neurological conditions in that…

I saw this question asked in a group somewhere not long ago and it got me thinking. Would I go back to the way I was before my multiple sclerosis diagnosis? No, I wouldn’t.  That may sound strange, I…

Complementary and alternative medicines are increasingly popular among people with multiple sclerosis (MS) in the northwestern United States, a survey found. More than 80% of the 1,000 people who responded to the Oregon Health & Science University (OHSU) survey reported using supplements and exercise to help treat their MS, and…

July is Disability Pride Month. Now, don’t slam me right away for writing this, but I don’t think we need a month highlighting disability pride — just like I don’t think we need a month in October spotlighting that we have rare diseases, especially because to me, multiple sclerosis…

Disability appears to mostly accumulate in people with relapsing forms of multiple sclerosis (MS) in a progressive manner — rather than being due to relapses, a pooled analysis of patients in two Ocrevus (ocrelizumab) clinical trials shows. These findings, indicating that disease progression underlies relapsing MS as well,…

Mavenclad (cladribine) prevents relapses and disease progression in more than half of patients with relapsing forms of multiple sclerosis (MS) for at least five years after the last dose, according to a real-life study from Italy. These findings, based on real-world data from Italian MS patients previously treated…

Yup, it’s the annual whinge about what heat does to most of us, this time livened up by a headline that includes two Beatles’ song titles. (Yes, I did have to scroll through their discography to find the deeply submerged second — a George Harrison number off “Yellow…

Tecfidera (dimethyl fumarate) is as safe and effective in Hispanic/Latino multiple sclerosis (MS) patients as it is in their non-Hispanic and non-Latino peers, three-year data from a real-world study show. These interim findings, based on the largest group of Tecfidera-treated Hispanic and Latino MS patients studied to date, support the therapy’s…

Our thoughts influence our being. The stories we tell ourselves frame our reality. They affect the decisions we make, our behaviors, and ultimately our overall mindset. These serve to either nourish or starve our psyche. If we are what we eat, then are we what we think? Absolutely. We cannot…

The University of Alberta and PROTXX are collaborating to develop wearable sensors for people with multiple sclerosis (MS) and advance a remote healthcare platform that facilitates personalized care and reduces frequency of hospital visits. The wearable sensors will help monitor neurological, sensory, and musculoskeletal symptoms without the need to…

Exposure to disease-modifying therapies does not increase multiple sclerosis (MS) patients’ risk of developing a severe form of COVID-19, according to a registry-based study. However, MS patients who are older, obese, or have severe neurological impairments have a greater risk of developing a severe form of the disease. Findings…

Note: This column was updated July 23, 2020, to remove erroneous information about red blood cells. We regret the error.  When I was newly diagnosed seven years ago, one of the hardest things to deal with was the idea of having…

Last Wednesday my days of rest suddenly smashed to a halt. At one point it seemed like the majority of those who work for my local council’s social services (whom I should have also thanked for their immense help over the last few weeks, mea culpa) were squeezed into…

It’s been a few weeks since I’ve written about the impact that COVID-19 is having on people with MS. Since then, the picture has changed — not a lot, but enough for the MS International Federation to modify its recommendations for that illness, people with MS, and…

MyHealthTeams and EMD Serono have teamed up to launch the Treatment and Adherence Resource Center, a new informational tool within the MyMSTeam social network for people living with multiple sclerosis (MS). The new resource center is geared toward educating MS patients about the importance of starting…

Over the years, I have observed how others deal with multiple sclerosis and its symptoms. This disorder is not one-size-fits-all, and it doesn’t discriminate. Recently, I came across a video of ABC News interviewing actress Selma Blair about her multiple sclerosis diagnosis and management. Although the interview happened over…

I’m a fraud. Or at least I feel like one.  When writing for a site about multiple sclerosis and setting up a business focused on my diagnosis to help others in the same boat, it is a requirement that I…

It hasn’t been that quiet in my surrounding world! Last week there was a crow fight so loud in our back garden that it echoed down the chimney into the front room that now is my bedroom. It sounded exactly like being in Hitchcock’s horror film “The Birds.”…

A couple new mobile apps for people with MS have caught my attention. Icompanion is among the best symptom and treatment trackers I’ve found. BelongMS combines patient forums with the ability to ask questions of healthcare specialists. Icompanion Several mobile apps allow users to enter information about how…

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 post, “Do you have eye issues due to MS?,” published Oct. 28, 2018.

I like my husband. I like his generous heart, his humility, and his penchant for Tommy Bahama shorts, T-shirts, and flip-flops. Sure, I love him. Yet our love has changed throughout our 23-year marriage. We have traded passion for patience and lust for loyalty. While each exists, they are…

Last updated April 25, 2023 In June, the U.K. marks Carers Week, which got me thinking about how a chronic illness diagnosis often affects a patient’s entire family.  Most often, patients are the focus of a diagnosis, and the people around them are almost forgotten. The…

Five people with multiple sclerosis (MS) who tested positive for COVID-19 while being treated with Aubagio (teriflunomide)  all developed a mild infection, had good outcomes, and experienced no disease relapses, a case study reported. These findings suggest that use of Aubagio, a disease-modifying therapy that acts on the immune system,…

An international committee of multiple sclerosis (MS) experts further clarified how guidelines, updated in 2013, should be used to classify this disease’s different states, and stressed the importance of measuring these states in a timely and consistent manner. The group’s statement, “The 2013 clinical course descriptors…

Are you tired? Really tired? Me, too. Most of us with multiple sclerosis are. How many is most? A small new study of 44 people with one of the progressive forms of MS found that the answer is a little over 86%. (I’m surprised the number isn’t higher.) They…

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 post “I’ve Been Spoiled by My Clinical Trial,” published March 5. Share your…