living with MS

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…

When you live with multiple sclerosis you search for ways to manage your disease. You turn to doctors who inevitably prescribe one of the many FDA-approved medications, but sometimes that’s not enough. To complete the picture of seeking better health, you need to also look outside…

Being disabled by MS does not have many advantages. One — free city street parking in California — is likely to end soon. In the rush to garner parking revenue, though, the lack of concurrent discussion about providing dedicated handicapped parking (DHP) is troubling. The widespread abuse…

I am sure many of us have had instances where someone “offered” their advice on what is the best way to manage our illnesses. They are not medical professionals and many of them don’t suffer from the disease themselves. They present their beliefs as scientific dogma, often referring to…

For most of the 36 years since I was diagnosed with multiple sclerosis I’ve not been bothered by pain. Just lucky, I guess. Until last month. Suddenly, I’ve developed pain in both hips and I don’t know why. The pain is most intense when I first put my feet on…

On March 27, 2013, my primary care physician called me about MRI results from the day before. He and the radiologist concurred; they had found evidence of brain lesions consistent with multiple sclerosis. Following protocol, he sent me to the best specialist in Seattle to confirm diagnosis. His was a preliminary diagnosis. In the…

My last column “Serenity Now: Relaxation Techniques for MS, Part One” offered some quick and easy suggestions on how to relax in times of stress. This column is a continuation of that series. Movement, massage and applied pressure to the correct areas have many benefits. Massaging certain areas of…

Here’s my Pick of the Week’s News, as published in Multiple Sclerosis News Today. National MS Society-Sponsored Group Creates Tool Set to Measure Outcomes in MS Clinical Trials Speeding up clinical trials should have the knock-on effect of shortening the whole process of developing and approving new…

People with multiple sclerosis (MS) are more likely to develop kidney or bladder stones than those without MS, a new study concludes. The report, “Multiple sclerosis and nephrolithiasis: a matched-case comparative study,” appeared in the journal BJU International. Stone disease is highly lethal in patients with spinal cord injury (SCI), a condition that,…

It seems I’ve made it to my second weekly column. I was going to write about a non-MS physical impairment that had kept me down for a month. It’s easing now and hopefully will make a future story with a happy ending. Instead I’m going to do a bang-up-to-the-moment piece…

There won’t be a lot of my words in this column but there will be lot of pictures. The column is devoted to some very personal multiple sclerosis art: Tattoos. Most of these “tats” contain an orange ribbon, the symbol for MS awareness. Some, as you’ll see, are a…

(Editor’s note: Today, Tamara continues her occasional series on the MS alphabet by giving further attention to the letter B.) 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, and recite…