living with MS

It’s been less than a month since Ocrevus was approved by the FDA, and the buzz hasn’t died down. Though there is some trepidation, the MS community is incredibly excited about what the new “game-changing” medication can do for patients all across the country. Here are just a few…

Multiple sclerosis is a very complex disease that attacks the central nervous system. The symptoms MS generates are random, affect everyone differently, and are categorized either as primary MS, or secondary MS, symptoms. Primary MS symptoms are the direct result of the disease itself — byproducts of the damaged…

There are a few moments when life changes. In my day, it was meeting your partner across a crowded room. Now it’s sadly the flick of an app. What hasn’t changed is that only later do you realize this really was a moment. This isn’t a story about romance…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this second of three parts on terms starting with the letter “C.”) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and Qs, dot your Is, cross your Ts,…

A lot has changed in multiple sclerosis research and treatment since I was diagnosed 30 years ago. Here are a few things I was told originally that are no longer true: There’s less than a 1% chance for a child to inherit their mother’s…

T.S. Eliot’s opens his masterwork The Waste Land with four stunning lines of verse: April is the cruellest month, breeding Lilacs out of the dead land, mixing  Memory and desire, stirring  Dull roots with spring rain.  It seems odd to say that April is…

Pamela Arterbridge is one of 70 people at Ohio State University’s Multiple Sclerosis Center taking part in the open-label part of a clinical trial for ocrelizumab, now best known as Ocrevus.  She is a patient of Dr. Michael Racke, who is a pioneer in the field of B-cell treatments for MS,…

Texas firefighter Wayne Donovan is among the estimated 250,000 to 350,000 Americans with multiple sclerosis (MS). He enrolled in a clinical trial testing Ocrevus (ocrelizumab), which the  U.S. Food and Drug Administration recently approved as the first therapy for both relapsing and primary progressive forms of MS. Donovan was diagnosed in 2011 at…

The dating process is the prerequisite to most serious relationships. We invest a significant amount of time to assess whether we are compatible with the person of interest. Dating should be fun and we should look forward to future possibilities. For the past few days I’ve been thinking about dating…

With last month’s approval of the multiple sclerosis drug Ocrevus, I’ve again heard the plea “But how can I afford it?” Ocrevus carries a price tag of about $65,000 a year. That’s not high compared to some other MS drugs, but it still can mean a higher…

Caleb Taylor, a second-year University of Kentucky Law School student, has chosen a challenging way to raise awareness and raise funds for multiple sclerosis, a disease that changed his family’s life forever when it struck his mother. Taylor will pedal across America as part of the Bike the US for…

Multiple Sclerosis News Today interviewed Dr. Linard Filli,
 an MS researcher at the University Hospital Zurich involved in clinical studies of prolonged release Ampyra (dalfampridine), on walking ability in MS patients, and Dr. Andrew Blight, chief scientific officer at Acorda Therapeutics, the treatment’s developer. Here is a full transcript of that interview. An…

More than 2,000 bicyclists are expected to join in the 30th Annual Running of the Bike MS: Sam’s Club Round-Up Ride, set for May 6-7 in Fort Worth, Texas. The two-day, 163-mile trek’s objective is to raise $1.8 million in funding for people living with multiple sclerosis (MS). Last year, participants pedaled 279,000 miles…

These might be the days of the gig economy, but I’ve been doing one every Tuesday for 27 years. My particular white van (for US readers the delivery drivers of such are a British stereotype of the new Amazon order — or lack of it) is a comedy vehicle…

There was much fanfare when the multiple sclerosis drug Ocrevus (ocrelizumab) finally was approved by the U.S. Food and Drug Administration last week. Perhaps a little too much fanfare? For example, a story broadcast on the NBC Nightly News focused on a woman, apparently a participant in an…

The use of antibiotics in childhood, which alters the microbiome — or natural bacteria flora in the gut — may increase the risk of multiple sclerosis (MS), inflammatory bowel disease (IBD) and other inflammatory diseases, according to an Australian study. The mouse study, “Early-life antibiotic treatment enhances the…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with the first in a three-part series of terms starting with the letter “C.”) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and Qs, dot your…

Ocrevus is a “fabulous” drug that does wonders for those who respond to it. That’s the view of an MS nurse practitioner in Florida, with whom I spoke this week. Tricia Pagnotta works at the Multiple Sclerosis…

I was a teenager during the 1980s and cannot say the word “holiday” without Madonna’s song playing briefly in my head. For most holidays the perky music seems okay, but for discussion of a “drug holiday” it feels a bit off. Sort of like, “Yay! You have a chronic…

The past few days have been remarkable in the multiple sclerosis (MS) community, with the U.S. Food and Drug Administration (FDA) approving Ocrevus to treat relapsing MS (RRMS) and primary progressive MS (PPMS) in the United States. Ocrevus — adminstered intravenously every six months — is the first drug…

Ampyra is marketed as the only multiple sclerosis (MS) drug that is designed to increase an MS patient’s walking speed. Clinical studies show that patients who use the drug walk as much as 20 percent faster. Ampyra improved my speed, several years ago, when I was on…

While few of us choose to become caregivers, many of us are faced with the task if a loved one is diagnosed with a chronic disease. The transition is a strange time for everyone involved, as the nature of the relationship changes for both the caregiver and patient. However, it is…

Today, my Pick of the Week’s News is devoted to various news stories, all published by Multiple Sclerosis News Today, about FDA approval of Genentech’s Ocrevus as an MS treatment. FDA Approves Ocrevus as 1st MS Treatment for Both Relapsing and Primary Progressive Forms Last week’s approval of Ocrevus (ocrelizumab) by…

Thirteen years ago, a neurologist sat on the edge of my hospital bed and told me, “You have MS. It’s not the end of the world. There’s more on the internet than I could ever tell you about, so I suggest you do some research. Good night.” Since…

In the summer of 2012 David Bowie’s song “Heroes” became the anthem of the London Olympics despite Bowie turning down an invitation from British director Danny Boyle to be part of the opening ceremony. Gracious as ever, Bowie agreed to a meeting. Boyle had a lot to thank him for. Bowie…

To scoot or not to scoot? Is is better to drag your legs around for as long as you can, or to give in and get yourself a set of electric wheels? That decision prompted the following vent on a multiple sclerosis Facebook group recently: “I’m just…

As the challenge of living with multiple sclerosis (MS) often leaves patients feeling isolated and depressed, the biopharmaceutical firm EMD Serono has launched an online storytelling platform called My Story. The platform is designed to be an empowering and therapeutic support resource for patients and caregivers in their struggles with MS.

It appears my favorite way to fly — wearing leggings or yoga pants — isn’t sanctioned by United Airlines. Fortunately, I’m not one of their employees, and I am not related to one who might be able to share free travel passes with me. How sad. Normally that would be a…

Caregivers are in the spotlight during MS Awareness Month and, as it draws to a close, one man with multiple sclerosis is calling for everyone with the disease to recognize them. Dan Melfi, who lives in the…

Editor’s note: Marking the second MS diagnosis anniversary of our columnists in one week, Judy Lynn writes about the “Anniversary Effect.” This week marks the 14th anniversary of my MS diagnosis. That day, March 27, 2003, is etched clearly in my mind.  Ask me about anything else I was doing…