The MS Wire - A Column by Ed Tobias

Florida, MS biomarker, Lemtrada, nasal spray

Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.

45 Years and Counting, Even With MS

Happy anniversary to us! My wife, Laura, and I are celebrating our 45th wedding anniversary this month. It’s hard to believe, especially because the divorce rate for someone with multiple sclerosis is higher than it is for a healthy couple. A review of records in the Danish MS-Registry a…

Should Dr. Google Help Guide Your Treatment?

Paging Dr. Google. OK, maybe I’m being overly dramatic, but The Wall Street Journal recently reported that Google and HCA Healthcare have struck a deal to share data and create healthcare algorithms. HCA plans to use the data system to improve operating efficiency, monitor patients, and even guide some…

How Do You Define an MS Cure?

“Why aren’t researchers doing more to find a cure for multiple sclerosis?” “Why isn’t more effort and money devoted to this?” I regularly read comments like these after I write a column about a new disease-modifying therapy (DMT) that’s either being tested or has just been approved. Some, like Multiple…

When an Unexpected Driving Test Causes a Pseudo-flare

My tough day started when Brenda asked, “Why do you use that scooter?” Brenda was sitting behind a desk at the Charlotte County Tax Collector’s Office in Florida, where my wife, Laura, and I hoped that transferring our driver’s licenses from Maryland to Florida would be an easy chore.

This New Tool Can Help You Choose Which DMT to Use

Sometimes it seems as if people with MS are asked to flip a coin to make what’s arguably the most important decision about their treatment: which disease-modifying therapy (DMT) to use. More than 20 DMTs are approved in the U.S., similar to what’s available in the rest of the…

What Do the Oscars and Our COVID-19 Response Have in Common?

What could the Academy Awards and COVID-19 possibly have in common for people with disabilities? Stay tuned, and I’ll tell you. First, the Academy Awards. The documentary “Crip Camp,” about a summer camp for young adults with disabilities, was up for an Oscar. Its co-director and co-star, Jim LeBrecht,…

Let’s Treat Older MS Patients With More Respect

As comic Rodney Dangerfield might have said, older people with MS “just don’t get no respect.” By older, I mean those of us who are 55 and up. By respect, I mean from researchers and some neurologists. So, as I approach my 73rd birthday, I have to tip my cap…

My MS Likes It Hot, and Florida’s Just the Place

Many people with MS avoid Florida. I crave it. My wife and I finally returned here in early March, escaping dreary, rainy, and windy Maryland after we received our COVID-19 vaccines. Since we arrived, the weather has been wonderful, with few clouds and temperatures warm enough for swimming outdoors. Swimming,…

An Update on My Lemtrada Journey, 3 Years After Round 2

Where has the time gone? It’s been three years since I completed my second round of Lemtrada (alemtuzumab) infusions. So, it’s time to take another look at where this journey has taken me. Lemtrada is a monoclonal antibody treatment that wipes out rogue B- and T-cells in the…

Ocrevus and PML: Should We Be Worried?

The journal JAMA Neurology recently reported that a 78-year-old man with progressive multiple sclerosis died after being diagnosed with progressive multifocal leukoencephalopathy (PML), a brain disease. The man, diagnosed with MS about 30 years ago, had been treated for two years with Ocrevus (ocrelizumab), and had no previous…

The MS Immune System: Suppressed, Compromised, or What?

Lately, I’ve seen a lot of incorrect information on social media about how multiple sclerosis affects our immune system. Some of it seems to be prompted by concerns that MS makes someone more susceptible to COVID-19, or confusion about whether people with MS can safely receive a COVID-19 vaccine. Here…

The Disturbing Trend of Caregiver Abuse in the MS Community

This is disturbing and, unfortunately, not surprising. More than 50% of people with advanced multiple sclerosis reported they’ve been mistreated by a family member or friend who cares for them, according to the results of a survey published last September by researchers at the University of California, Riverside. Much…

Are You Having Trouble Paying for Your MS Medications?

If you’re having trouble paying for your MS medications, you’re not alone. I regularly see social media posts from people whose insurance has changed or whose insurance company has suddenly dropped a medication from its formulary (the list of meds it will pay for). Or, it has decided that you…

The First COVID-19 Shot Is Finally in My Arm

It’s a good thing my wife, Laura, is persistent. Thanks to her tenacity, we’ve both been able to get our first shots of the Moderna COVID-19 vaccine. According to the pharmacist who gave us our shots, in two weeks we should be about 60% protected from the SARS-CoV-2…

Upper Body Health Also Is Important for People With MS

My left hand was numb and weak when I was first diagnosed with multiple sclerosis. For years after that, symptoms above my waist seemed just as prevalent as those below it. Yet, there were no tests being used that measured my waist-up disability level — nothing equivalent to the…