living with MS

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 T-cells in the…

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…

So, where off Earth have I been? Nothing as adventurous as a space flight, I’m afraid, but a more prosaic litany of mishaps. First, I did crash, but that was from a vicious steroid withdrawal. My body went limp. Later, it would become even limper. A small wound on…

Photo courtesy of @JackieHicksFondMemories Day 26 of 31 This is Stacy Barton’s story: I’m Stacy Barton, and this is my story: In 2005, I was married with two children, including an autistic daughter, and working on Capitol Hill.  I had grown accustomed to walking around…

Last updated April 25, 2023 Expectations equal resentment. It’s simple logic, yet profoundly true. Each time I set an expectation for myself or someone else, I set myself up for a potential letdown. Resentment happens as a byproduct of disappointment, despite the best intentions. As my multiple sclerosis (MS)…

Photo courtesy of Colin Hirst Day 25 of 31 This is Colin Hirst’s story: Hello, I’m Colin and I have relapsing-remitting MS. Simply put, MS is an auto-immune disease that makes your body’s own cells break down the myelin around your nerves because it believes they are…

Photo courtesy of Matthew Embry Day 24 of 31 This is Matthew Embry’s story: Hi! My name is Mathew Embry, and I was diagnosed with multiple sclerosis in 1995. More than 25 years later, I am living symptom-free and making the best of…

“Is this the real life? Is this just fantasy?” The other night I watched the movie “Bohemian Rhapsody,” and seeing the portrayal of the late Queen frontman Freddie Mercury as he faced an HIV/AIDS diagnosis brought my own MS diagnosis…

Photo courtesy of Dawn Morgan Day 23 of 31 This is Dawn Morgan’s story: Hi! I’m Dawn Morgan. I have been living with relapsing-remitting MS since 2000, when I was 25. It was a complete shock. At the time, I was just beginning my professional career as…

Pilates, done regularly, can significantly improve balance and posture in men with multiple sclerosis (MS), helping them to avoid falls and the injuries they can bring, a small randomized trial in Iran reports. The study, “Effect of Twelve weeks Pilates training on functional balance of male patients…

Photo courtesy of Caroline Gellatly Day 22 of 31 This is Marissa Green’s story: I am Marissa, a fundraiser, drama therapist, and mental health practitioner who loves the outdoors, cooking, music, and any excuse for a party. My original diagnosis, Balo’s concentric sclerosis, happened in…

The National Multiple Sclerosis Society (NMSS) is helping Pack Health, a patient engagement platform, to optimize and expand its digital health coaching program to assist people living with multiple sclerosis (MS). Building on what it has learned through work with the NMSS, Pack Health aims to bring its patient-centered and…

Most patients with relapsing and progressive forms of multiple sclerosis (MS) are encouraged to get vaccinated against COVID-19 — and any vaccine of three authorized for use in the U.S. is safe to receive — according to recent guidance from the National MS Society. Despite mounting evidence that…

Photo courtesy of Rebecca Anton Day 21 of 31 This is Rosani Christy’s story: My name is Rosani Christy, and I have been living with MS for over 20 years.  I have always been a class clown. Making those around me laugh gave me a high, and…

Photos courtesy of Esme Robinson Day 20 of 31 This is Bron Webster’s story: Multiple sclerosis is unpredictable and volatile.  I got my diagnosis in 1996. I adapted. I gave up my 20-year financial services career in 2008 to focus on my daughter. I retrained…

For a week, I’ve spent my afternoons painting our enclosed garden. When we built it last spring, the wood was new and lovely, but rain and sun have taken a toll on everything, leaving it dingy and dull. And now that we have a custom-built white shed (courtesy of my…

Lately, I’ve seen a lot of incorrect information on social media about how multiple sclerosis affects our immune system. Some of it seems to be prompted by concerns that MS makes someone more susceptible to COVID-19, or confusion about whether people with MS can safely receive a COVID-19 vaccine. Here…

Photo courtesy of Conor Devine Day 19 of 31 This is Conor Devine’s story: I have been living with MS now for more than 15 years, which I would summarize as follows: 2006–2011. The first five years were horrendous. I gave up, felt awful most…

Concerns about COVID-19 caused people with multiple sclerosis (MS) to postpone or deviate from recommended care — including appointments, imaging scans, and laboratory tests, a survey found. But notably, while most patients perceived their disease-modifying therapies as an added risk factor…