Author Archives: Ed Tobias

“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…

NICE Again Says No to Adding Zeposia to Health System for England and Wales Reading this news, I’m again reminded of the major difference between the healthcare system in the U.S. and those in most of the rest of the world. While the systems outside the U.S. provide most…

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.

Fatigue Prevalence Remains High in MS Patients Is this a surprise to anyone who has lived with MS for any period of time? Over the many years since my diagnosis, fatigue has been my second most bothersome symptom. (Trouble walking is the first.) In this survey, researchers write that…

Are you being treated with a disease-modifying therapy (DMT) and wondering how it might affect the efficacy of an mRNA-based COVID-19 vaccine? If so, a recent study may provide some clarity. The study, published in Therapeutic Advances in Neurological Disorders, looked at 125 MS patients either being treated with…

Phase 4 Trial Will Test if Ocrevus Can Prevent MS Onset in RIS Patients Yes, you’re reading this right. This trial aims to see if Ocrevus can stop MS before it’s officially diagnosed — when it may be smoldering and presenting a minimum of MS-like activity. In July, this…

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…

FDA Rejects Under-the-skin Tysabri for Relapsing MS I expect this decision will be a disappointment for those who had hoped to be able to self-administer highly effective Tysabri as a shot rather than an IV infusion. But I switched from Avonex to Tysabri, because after a few years of…

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,…

#AANAM – COVID-19 Often Leads to Flares in MS Patients, Survey Finds I’ve read more than a few social media posts from people with MS who are concerned that the COVID-19 vaccines will cause a flare. National MS Association guidelines say the vaccines may cause a temporary, mild fever…

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…

Helper T-cells Drive Transition from RRMS to SPMS, Study Suggests The T-cells referred to in this study, known as CD4+ cells, are believed to play a significant part in central nervous system inflammation. The disease-modifying treatment Lemtrada (alemtuzumab) is designed to destroy these misbehaving T-cells, along with B-cells, so…

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,…

Retinal Layer Thickness May Predict MS Progression, Relapses We all know how unpredictable MS is. For some, it progresses very quickly, while for others, it follows a slow progression over many years. Wouldn’t it be nice if we knew the course our disease is likely to follow, right from…

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…

SPMS Patient First to Be Treated With Antibody Given via Nasal Spray How great is this? As someone who gave himself an injection in his thigh for many years and received IV infusions for many more, an MS antibody treatment sprayed into the nose is wonderful news. This approval…

“I’ve had my shots, so I’m protected,” a friend recently told me, referring to the COVID-19 vaccine.  My wife and I also have received our COVID-19 vaccines. More than a month has passed since our second shots of the Moderna vaccine, so we are protected — theoretically. But theory doesn’t…

Certain Factors Worsen Outcomes in MS Patients With COVID-19 The worse your MS disability is, it seems, the worse the outcome if you’re infected with the novel coronavirus that causes COVID-19. If you’re still debating whether to get a COVID-19 vaccine, this might help you make up your mind.

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…

Ponvory (ponesimod) Approved for Adults With Relapsing Forms of MS Add one more medication to the disease-modifying therapy (DMT) arsenal. Ponvory is a once-a-day pill that aims to reduce immune system activity. It’s similar to Aubagio (teriflunomide), which I used for about two years, and which I believe helped…

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…

NeurologyLive, CMSC Launch Expert Video Series ‘Cure Connections’ This series of 13 videos, designed for healthcare professionals, focuses on diagnosing MS, its psychological impact, managing symptoms, and treatments. Quality-of-life issues, fatigue, and patient support networks also will be discussed. I hope general neurologists will watch it, not just MS…

Last week, my wife and I were back in Bowie, Maryland, for our second shot of the Moderna COVID-19 vaccine. It was a sunny and warm afternoon after a windy, cold, and wet month. We hoped that was a good omen. Nina, the same pharmacist who gave us our…

All of the stories this week are from the ACTRIMS 2021 Forum, an MS research conference held virtually Feb. 25–27. #ACTRIMS2021 – COVID-19 Vaccines Safe for MS Patients, Minimally Affected by DMTs My wife and I received the second shot of the Moderna vaccine last week. (You can read…

“Ooooops!” Actually, I spit out a shorter, one-syllable word as I took one of the scariest tumbles I’ve had in 40 years of living with MS. But this is a family column. My last scary fall a few years ago happened from a sitting position, and I fell onto…

Stories marked #ACTRIMS2021 are by members of the Multiple Sclerosis News Today team, who reported on this annual conference of MS researchers, held virtually this year due to COVID-19. #ACTRIMS2021 – 30 Minutes in Sun Each Day Lowers MS Risk in Children Can it really be this…

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…

Drop in PML With Tysabri Use in Sweden Likely Due to Risk Management Plan I’m JCV-positive, so I’m at risk for PML if I’m being treated with Tysabri. And I was treated with Tysabri for seven years without a problem. That, I believe, is because my neurologist carefully followed…

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…

National MS Society Urges DMT Dosing Changes for COVID-19 Vaccinations The National MS Society has revised its COVID-19 vaccine recommendations first issued about a month ago. The guidelines still say the Moderna and Pfizer vaccines are considered safe for people with MS, including those using disease-modifying therapies, or DMTs.