Living with MS

Sometimes it seems as if people with MS are asked to flip a coin to make what’s arguably the most important decision about their treatment: which disease-modifying therapy (DMT) to use. More than 20 DMTs are approved in the U.S., similar to what’s available in the rest…

The combined use of generic and disease-specific health-related quality of life (HRQoL) measures gives a clearer representation of the effects of multiple sclerosis on patients’ quality of life and enables a more accurate comparison across countries, a study has found. “The…

In honor of MS Awareness Week, observed in the U.K. April 19–25, the MS Society released results of a survey about the barriers that keep multiple sclerosis patients from sharing their health status. Multiple Sclerosis News Today‘s Mary Chapman reported that a whacking one-third have stayed silent about their diagnosis.

I am the unlikeliest of warriors. Being called one makes me a little uncomfortable. While I appreciate the sentiment, I feel unworthy of the title. A warrior chooses to battle independent of circumstance. I do so because it is my only option. Multiple sclerosis calls me to fight. Perhaps in…

Trigeminal neuralgia is a term used for facial pain associated with damage to the trigeminal nerve, or the 5th cranial nerve — the largest one among the body’s 12 pairs of cranial nerves and one of the most widely distributed nerves in the head. Usually occurring in people older…

Multiple sclerosis (MS) is a disease that is unique to each patient, meaning that no two people experience the exact same disease manifestations. While there are common symptoms that many MS patients share, such as pain and chronic fatigue, some may experience more unusual symptoms. Seven of…

In her poem “In Blackwater Woods,” Mary Oliver concludes with 10 breathtaking lines: “To live in this world/ you must be able/ to do three things:/ to love what is mortal;/ to hold it/ against your bones knowing/ your own life depends on it;/ and, when the time comes…

I was listening to a BBC podcast recently titled “The Sinister Hand,” about the history of left-handers. It seems that in medieval times, left-handedness was associated with sorcery. (What wasn’t?) It was only relatively recently that left-handed children were no longer forced to write right-handed — sometimes even…

As comic Rodney Dangerfield might have said, older people with MS “just don’t get no respect.” By older, I mean those of us who are 55 and up. By respect, I mean from researchers and some neurologists. So, as I approach my 73rd birthday, I have to tip my…

She held me in a fierce hug. It had been a year since I had held my mother so closely. I rested my chin on her shoulder and silently thanked God. As I looked up, my eyes met hers. I knew what question was coming, along with the weight of…

An MS Society survey found that about one-third of people with multiple sclerosis (MS) in the U.K. have kept their condition hidden from their partner, family members, employer, or work colleagues. To help mark MS Awareness Week, observed in the U.K. April 19–25, the nonprofit organization released…

Kesimpta (ofatumumab) has been approved in the U.K. as the first self-administered, at-home, B-cell-targeting therapy for people with relapsing forms of multiple sclerosis (MS) and active disease. More specifically, the approval includes patients with either clinically isolated syndrome, relapsing-remitting MS (RRMS), or active secondary progressive MS (SPMS), who have…

The trouble with a degenerative disease is that things only get worse. In the long-gone days of my youth, I somehow wrangled myself into being an arts critic. Wizened journalists imparted the lore that a bad show was much easier to write than a rave. Satirical barbs are far more…

Many people with MS avoid Florida. I crave it. My wife and I finally returned here in early March, escaping dreary, rainy, and windy Maryland after we received our COVID-19 vaccines. Since we arrived, the weather has been wonderful, with few clouds and temperatures warm enough for swimming…

Many believe pain and suffering are interchangeable. While they can and often do coexist, one is not reliant on the other. Pain can occur with or without suffering, and the inverse is true. Physiological, psychological, and psychosocial factors influence our experience with each. The meanings and relationships of these three…

The MS Trust welcomes adolescents with a connection to multiple sclerosis (MS) to join as reporters for its YouTube channel, the U.K. charity announced. Since its April 2018 launch, MSTV has featured young people with MS or those close to them sharing their experiences and first-hand knowledge through…

Retinal Layer Thickness May Predict MS Progression, Relapses We all know how unpredictable MS is. For some, it progresses very quickly, while for others, it follows a slow progression over many years. Wouldn’t it be nice if we knew the course our disease is likely to follow, right from…

Where has the time gone? It’s been three years since I completed my second round of Lemtrada (alemtuzumab) infusions. So, it’s time to take another look at where this journey has taken me. Lemtrada is a monoclonal antibody treatment that wipes out rogue B- and…

Tecfidera (dimethyl fumarate), Gilenya (fingolimod), and Ocrevus (ocrelizumab) are losing ground to more recent therapies among U.S. multiple sclerosis (MS) patients switching treatment, according to the latest Spherix Global Insights’ report. The launch of MS generics, bioequivalents, and new brands in the U.S. market over the past year has increased…

People who develop multiple sclerosis (MS) as children are more likely to attain lower education levels, earn less in the workplace, and be more reliant on disability benefits later in life, new research shows. These findings were published in JAMA Neurology, in the study, “Long-term Socioeconomic…

Sunlight flooded my bedroom. My tired eyes slowly pulled apart. Realization set in: It was Saturday. Yes! I love Saturdays.  As I got out of bed and glanced outside my window, a crazy thought crossed my mind.  “I’m going running.” I hadn’t…

The daffodils are in full bloom. There are leaves on my Japanese red maple tree again. Seeds are going into the garden. Yes, the cruel season known as winter is coming to an end. The world is waking up again, exploding into a riot of color and birdsong otherwise…

The pandemic notwithstanding, MS Run the US has fielded 18 runners — including eight with multiple sclerosis (MS) — to traverse the United States to raise awareness and funds to support MS research and to aid those living with disability caused by the neurodegenerative disease. The organization’s Ultra…

I am an optimist in a pessimistic world. A fish out of water. I hold hope to ward off messages of defeat. In a world rife with suffering, hope is essential for soul survival. In my world with secondary progressive multiple sclerosis, it has been my saving grace.

Photo courtesy of Katie Collett Day 31 of 31 This is Katie Collett’s story: “You have multiple sclerosis” were words that struck fear in my heart nine years ago. I thought my life and my dreams were over. As I learned more about my diagnosis and met…

It’s nearly the end of MS Awareness Month.  Previously, I spoke about helping out with the 31 Days of MS initiative by MS News Today and its parent company, Bionews, to help raise awareness of MS. As…

Photo courtesy of Sam Mizzelle   Day 30 of 31 This is Kathy Reagan Young’s story: I’m Kathy Reagan Young. I was diagnosed with MS 13 years ago. I was so blindsided when I got the diagnosis, I don’t think I truly processed it for a couple…

Photo courtesy of Joanna Hammond Day 29 of 31 This is Joanna Hammond’s story: I was diagnosed with MS back in January 2018, and I felt like my world had fallen apart. One of the very best things I did very quickly was to attend my local…

Photo courtesy of Carter Stough Lowe Day 28 of 31 This is Carter Stough Lowe’s story: I first noticed extreme blurriness in my right eye when I was home for my grandfather’s funeral and informed my mother of my vision problems. She sent me to her eye…

Photo courtesy of Stephanie Wiley Day 27 of 31 This is Caroline Craven’s story: This year marks 20 years since my MS diagnosis, yet every day brings something new. Every day reminds me of some shift in life that I chose to make so that thriving with MS is…