June 25, 2021 Columns by Ed Tobias Was It Vertigo That Sent Me Tumbling the Other Day? In the four decades I’ve lived with MS, I’d never before experienced a serious case of vertigo. I’ve occasionally felt a little spacey. In fact, mild dizziness while traveling home from a business convention is one of the things that led to my MS diagnosis in 1980. But vertigo is…
June 21, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Myelin Repair, Early DMT Use, Online Physical Therapy, At-home Exercise Scientists Discover Enzyme Needed for Activating Myelin Repair Here’s encouraging news for those interested in remyelination — and who isn’t interested in repairing our frayed MS nerves? Yes, it’s only a mouse study, but maybe it’s the starting point for finding a way to use a particular enzyme to…
June 18, 2021 Columns by Ed Tobias Do High Antibody Levels Mean I’m Protected Against COVID-19? Is 2,500 my magical COVID-19 number? At my annual MS checkup a week ago, my neurologist included a blood test for SARS-CoV-2 antibodies. Antibodies are proteins in the blood that protect the body from being attacked by viruses, bacteria, and the like. In this case, the blood test was searching…
June 14, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Stem Cell Trial, Young PWMS and DMTs, Exoskeleton, Tests for Kids Stem Cell Transplant Trial Enrolls First Patient in Minnesota It looks as if we’re moving closer to the day when stem cell transplants become an approved MS treatment in the U.S., at least I hope so. A trial is enrolling subjects to test the stem cells against several…
June 11, 2021 Columns by Ed Tobias 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…
June 7, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Nasal DMT, VR for Gait, Brain Stimulation, Amino Sugars Nasal Foralumab Led to Promising Immune Effects in Phase 1 Trial It sure would be nice to have a nasal spray to treat MS, but this research is still in its early stages. This study looked only at the safety and preliminary effectiveness of nasal foralumab on healthy volunteers.
June 4, 2021 Columns by Ed Tobias 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 decisions…
May 28, 2021 Columns by Ed Tobias 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…
May 24, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Zeposia, Music and Gait, Video Therapeutics, Treatment Perceptions 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…
May 21, 2021 Columns by Ed Tobias 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.
May 17, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Fatigue, Myelin, Gut Microbes, Bots Promoting Shots 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…
May 14, 2021 Columns by Ed Tobias Efficacy of Pfizer-BioNTech COVID-19 Vaccine Varies by DMT, Study Finds 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…
May 10, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Early MS, Fenebrutinib, Restless Legs, Safer MRIs 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…
May 7, 2021 Columns by Ed Tobias 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…
May 3, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: FDA and Tysabri, COVID-19 and CD20, Gilenya Infections, Therapeutic Lag 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…
April 30, 2021 Columns by Ed Tobias 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,…
April 26, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: COVID-19 and Flares, Hiding MS Status, Blood Proteins, Tysabri #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…
April 23, 2021 Columns by Ed Tobias 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…
April 19, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Helper T-cells, PML, WNT9B Gene, New MS Subtypes 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…
April 16, 2021 Columns by Ed Tobias 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,…
April 12, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Predicting Progression, DMT Costs, MS Rates 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…
April 9, 2021 Columns by Ed Tobias 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…
April 5, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Nasal Spray Treatment, Anxiety Management, POMS, PoNS 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…
April 2, 2021 Columns by Ed Tobias Why We Still Need to Wear Masks, Socially Distance, and Wash Our Hands “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…
March 29, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: COVID-19, UK ‘Mega-trial’, Pilates, Rituximab 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.
March 26, 2021 Columns by Ed Tobias 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…
March 22, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Ponvory, Ocrevus, COVID-19 Survey, Ampyra 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…
March 19, 2021 Columns by Ed Tobias 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…
March 15, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Cure Connections, PIPE-307, Temelimab, EHP-101 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…
March 12, 2021 Columns by Ed Tobias My 2nd COVID-19 Vaccine Shot Caused No Harsh Side Effects 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…