An magnetic resonance imaging (MRI) scan can be an odd experience for those who have never had one before. Knowing what to expect beforehand can calm the nerves, so this week, I’m sharing what my first MRI was like. For people with multiple sclerosis (MS), frequent MRI scans are…
Some interesting statistics about people with multiple sclerosis in the U.K. have been released by Public Health England. The numbers are intended to help health commissioners and providers assess “the needs of patients with MS and the provision of health and care services,” according to the government’s website. Primary…
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? Please visit our forum. I love it that Feb. 29 is Rare Disease Day in 2020. Leap day itself is a rarity, a gift…
Traveling is great! We love traveling, seeing new sights, eating different foods, and experiencing new things. But when you have a chronic illness, traveling can also be a nightmare. New germs, different food hygiene standards, sensory overload, jet lag, and crowds can make it difficult. For some, traveling is hard…
Dietary Changes May Delay Development and Progression of MS, Study Finds Methionine is an amino acid found in meat, eggs, and dairy. It’s absorbed by T-cells that are part of our immune system. Those cells are also believed to be the immune cells that attack our myelin, creating the…
Jan. 1, 2020 was a special day in our house, and not just because a new decade came into being. (Or did it?) It marked our 20th wedding anniversary, and my husband and I chose to celebrate in style this year by taking a cruise together. (Yes, if you’re…
This is the story of how I became a patient columnist. Three years ago, I was still walking. Shambling, anyway. I could get up and down stairs but had to rest before reaching my ordinary car with fitted hand controls. To go somewhere on my own, I needed someone to…
Are you frequently up at night for bathroom trips? When you’re outside, are you always looking for a loo? You’re not alone. A recent study confirms that the vast majority of people with multiple sclerosis are dealing with bladder problems. You probably know the symptoms: They include having…
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 “Newly Diagnosed MS Patients Show Changes in Gut Microbiome, Study Says,” from Dec. 3, 2019.
Myelin is the protective sheath that covers nerve fibers and is damaged in those with multiple sclerosis. Quantifying the degenerative process of myelin would lend perspective to how much and where a patient is progressing. Currently, MRIs are used for diagnostic purposes, but the nuances of progression remain difficult…
Welcome to 2020 and a new decade! I am thankful to still have the gift of life and to continue to share this space with you. I have read a multitude of writings and intentions for 2020. Resolutions are penned as the quest to live intentionally persists. 2019 was an…
One of the most annoying MS symptoms is fatigue. It’s as unpredictable as the British weather and a constant balancing act. On energetic days we tend to do too much, depleting our energy for the next day. Running a business is no…
Epstein-Barr Virus and Certain Genes Interact in Ways That Can Promote MS, Study Finds Much has been written over the years about a possible connection between the Epstein-Barr virus and multiple sclerosis. Here’s further evidence of a link that has to do with how particular genes interact with the…
I’m well aware that new converts can be bores. I started an increasingly trendy vegan lifestyle back in December. It’s only been two months, but it seems like a year! That’s because I love meat, fish, cheese, and eggs. Especially eggs. Yes, veganism is better for the planet, your…
Forced by medication costs to choose between regularly taking their medications or buying groceries, some people with multiple sclerosis are choosing the groceries. Some are skipping doses and others have stopped taking their disease-modifying therapies (DMTs) entirely. This troubling news is…
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 post, “Have you learned how to pace yourself?” from April 13, 2019. Have an…
To those who judge me for using my disabled parking permit when I seemingly look “healthy and well,” please consider your words. There are people out there who “call out” others who they think are “abusing the system” and taking up an accessible space when it looks like they don’t…
Mayzent Helps Regulate the Immune System in SPMS, Study Shows Mayzent (siponimod) is one of several disease-modifying treatments that target specific T-cells and B-cells involved in damage to the myelin that protects our nerves. This study reports a significant reduction in these rogue cells within a year of starting…
Well, this is one way of showing that I attended first-year philosophy seminars: Draw on the thoughts of Plato and Aristotle, then leap two millennia to Descartes. I never studied history, but I’m actually far more comfortable with it! Also, I don’t think I’ve ever built a column based on…
When I wrote about April Hester two years ago, she and her husband, Bernie, had just finished hiking the 500 miles of South Carolina’s Palmetto Trail. That’s no small accomplishment for anyone, but it was a particularly special achievement…
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 post “Researcher Receives $130K Grant to Study Sleep and MS” from Aug. 27,…
I am living with an unenviable reality. An antibiotic-resistant, hospital-acquired infection that I developed two decades ago has reappeared. Before my multiple sclerosis diagnosis, I had a spinal cord stimulator implanted for pain control. Although the stimulator was removed shortly afterward, the infection remained. This infection presents itself when…
“Hi! My name is Stephanie and I have multiple sclerosis and narcolepsy.” While I don’t introduce myself this way, knowing the right time to share this information can be challenging. When I meet someone, I wonder if I should mention it or wait until an appropriate situation arises. It can…
Have you ever wondered how some people seem to be able to do so much in a day, despite having some type of ailment, while others seem to be unable to do much of anything? This is something I have thought about for a long time.
Almost Half of MS Patients Change or Stop DMT Due to High Financial Burden, Survey Shows I frequently see reports of this on multiple sclerosis patient websites. People with MS say they’ve been forced to change or even stop their treatment because it costs too much. Some people have…
There was a time when I didn’t have deadlines. I’d finally finished academia. No more essays ever! In theory, I still had seven essays to write. Luckily, those essays could only improve my grade, so I got away with it. But only to a degree. I just scraped by with…
People with multiple sclerosis have been waiting for this: A full-scale clinical trial testing the effectiveness of stem cell transplantation as an MS treatment. The trial is being conducted by the U.S. National Institutes of Health, and it’s enrolling people with MS at several centers in the United States and…
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 post “Is It a Multiple Sclerosis Diagnosis or Something Else?” from July 20, 2018.
Traveling with secondary progressive multiple sclerosis is challenging. International travel adds some extra lengthy steps. That said, I have the bug. I’ve always had a hunger to see and experience new people and places. From a young age, I traveled alongside my parents, which gave me a cultural education…
“I will have to use a wheelchair.” That was my first thought when I received a multiple sclerosis diagnosis. After I got my ticket to the weirdest whirlwind weekend that I’d never expected to attend — three days in the hospital — the myths that…
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