The MS Wire - A Column by Ed Tobias

Dear Doctor, Why is it that you, or at least some of your colleagues, think that multiple sclerosis isn’t painful? Did you skip the med school class where they discussed MS? Are you not a neurologist, or are you a neurologist who doesn’t specialize in MS? Whatever the reason, this “MS…

#AANAM – RRMS Patients Switching to Lemtrada Report Greater Satisfaction with Treatment and Improvements in Quality of Life I’m a self-proclaimed secondary progressive, rather than a remitting, multiple sclerosis (MS) person. But a year after round two of Lemtrada (alemtuzumab), I can agree with this report. Several of my…

When I read online posts from people who treat their multiple sclerosis (MS) with vitamins and supplements, I wonder how many of us do that. And if these supplements really help. The people at the Accelerated Cure Project, which surveys those living with MS about things such as this,…

Ouch! The out-of-pocket cash that people with multiple sclerosis (MS) lay out for their medications increased 20-fold between 2004 and 2016. That information comes from a study recently published on the Neurology website. Looked at another way, monthly out-of-pocket costs for MS meds rose from about $15 to about $309 over 12…

Women with MS Have Higher Prevalence of Sexual Dysfunction, Study Reveals I’m surprised that someone felt it necessary to conduct a formal study of this. A glance at multiple sclerosis (MS) groups on social media, although unscientific, would suggest that this is a common problem. And if you’re going…

Robert Scola Jr. is a federal judge in Miami, and he’s just recused himself from a case involving the UnitedHealthcare (UHC) insurance company. The case is one of two filed in Miami over the last two months claiming that UHC has improperly denied coverage for a specific cancer…

There’s been a lot of social media chatter following the recent decision by the European Medicines Agency (EMA) to initiate a safety review of Lemtrada (alemtuzumab). The EMA has restricted use of the medication within the European Union (EU) while the review is underway. That’s worrying some people who are…

Study Will Explore Benefits of Tai Chi, Meditation on MS Patients’ Balance I’ve tried yoga to help with my balance and flexibility and found it useful. But tai chi scares me a little — it seems too difficult. Maybe, if the results of this study are very positive, I’ll…

Former Vice President Joe Biden has been in some hot water recently because of his habit of hugging some of the people he meets. More generally, in today’s society, some of the casual social touching that once went on, particularly in the workplace, has become out of bounds.

People who cover medical issues often write about mouse studies. These stories can regularly be found on traditional news outlets, both broadcast and print, as well as online platforms. That includes the website on which you’re reading this column. I’m one of the mouse study writers, though I try to…

Progressive multifocal leukoencephalopathy, more commonly referred to as PML, is a brain infection that’s frequently fatal. PML is particularly dangerous to people with MS, which is why I’m interested in a report about a medication that’s showing promise as a PML treatment. The concern for people with MS is…

MS Misdiagnosis Too Common, Puts Patients in Unnecessary Peril from Therapies, Study Reveals Many people who have multiple sclerosis (MS) report that it’s taken doctors years to come up with their diagnoses. So, it’s interesting to read a story about the opposite: those whose MS diagnoses were…

Most healthy people probably don’t have to worry about a fungus called Candida auris, or simply C. auris. But if your immune system is compromised, it’s a different story. Health officials say C. auris should be of special concern to people whose immune systems are not at full strength,…

  It’s tough paying for medications. Whether they’re for multiple sclerosis (MS) or another illness, Americans are having a hard time coming up with the cash needed to cover the cost of their meds. Many people are developing workarounds and compromises to deal with the problem. And in some…

Cleveland Clinic Neurologist Applauds Mayzent’s FDA Approval, But Surprised by Those It May Not Treat When I wrote my “MS Wire” column a few days after Mayzent’s approval, I wondered why the FDA had OK’d the medication for active secondary progressive multiple sclerosis (SPMS), but not…

As you might have heard, a disease-modifying therapy (DMT) for patients with active secondary progressive multiple sclerosis (SPMS) was approved a few days ago. That’s great news. A medication targeting SPMS is overdue, but it could be better. The DMT is Mayzent (siponimod), a tablet that’s taken…

MS Patient Groups React Favorably to Mayzent Approval, But Question Therapy’s Price Tag The approval of this medication is very good news. However, as the headline indicates, it comes with a relatively hefty cost. It’s approved for active secondary progressive multiple sclerosis (SPMS), and many of us have SPMS…

There are two types of people with MS: Those who have bladder problems and those who will have them. That may be an oversimplification but I’d be willing to bet that you, like me, have had that gotta-gotta-go problem too many times to count. Sometimes you make it…

Phase 3 Trial of ADS-5102 Recruiting Participants of All MS Types This medication is similar to Ampyra (dalfampridine) because its goal is to improve walking in those with MS. It sure would be nice if we had another medication approved that could do that. Though this trial began recruiting…

If you’re a member of the baby boomer generation, or if you just like the music of the 1960s and ’70s, you probably know Paul Simon’s “50 Ways to Leave Your Lover“: “‘The problem is all inside your head,’ she said to me. ‘The answer is easy…

About 15 disease-modifying therapies (DMTs) are available to treat MS these days. So, choosing which to use can be daunting. I’ve been treated with four DMTs since I was first prescribed Avonex (interferon beta-1a) back in 1996. Each time I’ve switched treatments, my neurologist has suggested a number of…

Non-contrast MRI Effective in Monitoring Progression of MS, Study Shows There’s been increased interest in the risks versus the benefits of using gadolinium to make lesions more visible on an MRI. The U.S. Food and Drug Administration issued an advisory last year raising the level of…

A post in one of the MS social media groups I follow recently asked whether kids can have MS. The writer was worried about her 3-year-old. One commenter replied that her son was diagnosed when he was 9. But, she wrote, his symptoms actually began to appear when he…

Have you ever heard of the word “polypharmacy”? I saw the word for the first time today. It’s generally defined as taking many medications together. There’s been debate over how many is “many,” but a number generally used is five or more. That describes me. I take…

All of the stories in this week’s column come from the recently held Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) forum, held Feb. 28 to March 2 in Dallas, Texas. #ACTRIMS2019 – Forum Leaders Discuss: ‘Will There Be a Cure for MS?’ A reporter for…

A recent article in The New York Times hit the nail on the head when it comes to describing the world we live in with MS. But the article isn’t about MS. The Times‘ Tessa Miller writes about Crohn’s disease, a type of inflammatory bowel disorder. Like MS, Crohn’s…

I received an email recently from the National Multiple Sclerosis Society in the U.S. promoting a searchable database of “credible doctors and resources.” A few days later, I happened to run across another online multiple sclerosis (MS) information service hosted by the HealthCare Journey website. They call it…

FDA Will Review New Drug Application of Diroximel Fumarate for Relapsing Forms of MS The good news: Another disease-modifying therapy (DMT) has taken a step toward approval in the U.S. The discouraging news: It’s another DMT designed to treat relapsing forms of multiple sclerosis. More than a…

Over the past few months, I’ve had a few things to say about actress Selma Blair and the very public way in which she’s been handling her MS diagnosis. When Blair went public with her MS last October, she did it on Instagram, writing, “I am…

Plasma is the fluid part of our blood that carries nutrients and blood cells through our bodies. Donated plasma can save the lives of burn and injury victims and it’s used as a treatment for hemophilia and other autoimmune diseases. Recently, some treatment centers in the United States…