Columns

Feb. 29 is Rare Disease Day. It’s a day on which those in the rare disease community attempt to raise awareness about their diseases. I don’t think MS should be included. With about 2.5 million people worldwide in the MS community, I don’t consider it to be rare.

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 forums. This week’s question is inspired by the forum topic “Do you have mood swings? What helps?” from Nov. 27, 2018. Do you…

I have secondary progressive multiple sclerosis and I am rare. In honor of Rare Disease Day on Feb. 29, I honor myself. I honor you and anyone else with a rare disease. I have been asked if multiple sclerosis qualifies as a rare disease. It does if…

Being diagnosed with a chronic illness isn’t easy by any stretch of the imagination. It comes with a new medical language to learn, a plethora of lengthy appointments, an impressive amount of blood tests, and a lot of frustration. But does it lead…

Flowonix’s Prometra II Pump System Receives FDA Approval for Use with Intrathecal Baclofen This new pump could be a major step forward for people with multiple sclerosis who use a pump to deliver baclofen directly into their spinal column. It uses a pressure-driven system rather than a motor-driven one,…

There’s a story I love to tell about my dad, a retail warrior with more than 30 years of experience under his belt. And it’s one that I think is apropos for those of us dealing with multiple sclerosis. Back in the 1980s when he was a department manager…

Myeliviz is the name of a new compound approved for a clinical trial in the U.S. that has the potential to make the process of diagnosing multiple sclerosis faster and tracking the disease progression easier. It does this by providing doctors with a better picture of damaged myelin —…

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 “My Service Dog Changed My Life” from July 17, 2018.  One of my…

I am hyperaware of the fragility of life. More specifically, the fragility of mine. Secondary progressive multiple sclerosis is an autoimmune disease. My immune system eats away at the myelin sheath surrounding my nerves. My disease-modifying therapy is an immunosuppressant. This further weakens my immunity. I have known…

The new year brings many changes, including the last year of my clinical trial. When I think about the past seven years, I am thankful for the opportunity to join the trial when I did and receive personal care that made fighting MS easier. It may sound crazy, but…

Ocrevus Use Rises Among New Starters with RRMS, Loses Ground to Other Therapies in PPMS Ocrevus (ocrelizumab) bolted out of the starting gate after it was approved for use in the U.S. about three years ago. However, though its use by people with relapsing forms of multiple sclerosis continues…

The medical profession must be sick and tired of patients diagnosing themselves via the wonders of the internet. But as a patient who’s sick and tired, you eventually have to. Medicine is full of orthodoxies that are incredibly hard to shake. When you find yourself at the edge of these…

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…