People say to write what you know and Ed Tobias knows about MS. He’s lived with the illness since 1980, when he was 32 years old. Ed’s a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.
This is my 823rd column for Multiple Sclerosis News Today. It is also my last. Over the past seven and a half years, I’ve written about multiple sclerosis (MS) fatigue and frustration, about treatments and travel, about neurologists (good and bad), stress,…
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Almost Half of MS Patients Change or Stop DMT Due to High Financial Burden, Survey Shows I frequently see reports of this on multiple sclerosis patient websites. People with MS say they’ve been forced to change or even stop their treatment because it costs too much. Some people have…
People with multiple sclerosis have been waiting for this: A full-scale clinical trial testing the effectiveness of stem cell transplantation as an MS treatment. The trial is being conducted by the U.S. National Institutes of Health, and it’s enrolling people with MS at several centers in the United States and…
New Trial Compares Stem Cell Treatment to Available Therapies for Severe Relapsing MS This is a biggie. The U.S. National Institutes of Health is conducting a head to head study comparing autologous hematopoietic stem cell transplantation (AHSCT) to the high-efficacy, disease-modifying therapies currently being used: Tysabri, Lemtrada, Ocrevus, and…
My nose started running about a week before the sledgehammer hit. Then came a chesty cough, not yet as serious as the one that had my wife wheezing, but I was worried that I’d soon catch up with her. I didn’t…
As more high-efficacy disease-modifying therapies (DMTs) are being made available, people with multiple sclerosis have to decide how much risk they’re willing to accept in exchange for the treatment’s potential benefits. It’s a tough decision not made any easier if a patient’s neurologist is unwilling to accept much risk.
MetP Pharma Awarded US Patent for Potential Remyelination Therapy Mention remyelination and the reaction from most of us with multiple sclerosis is probably, “How soon?” This announcement makes me hope that it’s now a little sooner. The process combines testosterone with a compound that changes the activity of something…
About a year and a half ago, Multiple Sclerosis News Today introduced a forums section. It’s a great place to post a question or comment about MS, or to answer someone else’s question. I’m one of the forum moderators, along with John Connor. I get around better than John,…
FDA Approves Three Generic Versions of Novartis’ Gilenya for Treating Relapsing MS It’s always nice to hear about generics becoming available to replace expensive multiple sclerosis treatments. But I wonder whether these generics will cost less than the brand-name medication. Will their availability help to drive down the price…
I used the Bioness L300, a functional electrical stimulation (FES) device, for about seven years to counter my left foot drop. I strapped it to my leg just below the knee. As I began to take a step, it sent a low-intensity electrical pulse down a nerve that runs from…
Immunoadsorption May Be Superior to Plasma Exchange in Treating Steroid-resistant Relapses in MS Steroids may be an effective treatment for multiple sclerosis relapses, but they have negative side effects. Many people report a metallic taste, while others find it hard to sleep. And long-term use can affect bone…
It happened on the coldest day of the season. It was 16 degrees F with wind chill. I was outside, using my electric scooter to take Joey, our cocker spaniel, for his early morning walk. Joey had just finished his business. I was tying the poopie bag when I heard…
CHMP Favors Mayzent as Oral Treatment Specifically for Active SPMS Patients in EU Mayzent (siponimod) is one of the newest disease-modifying treatments (DMT). I’m pleased that the Committee for Medicinal Products of Human Use (CHMP), which reviews treatments in the European Union, has recommended that the DMT be approved…
Google has quietly teamed up with Ascension, one of the largest healthcare organizations in the United States, to process the medical records of millions of people. According to The Wall Street Journal, “Project Nightingale” involves all sorts of information about things like lab results, diagnoses, and hospitalization records, and…
EMA Safety Group Advises Lemtrada Be Limited to ‘Highly Active’ RRMS Patients at Hospitals with ICUs I’m highlighting this report because, like several Europe-based doctors I know, I think that this decision is an overreaction. While there have been serious complications associated with Lemtrada (alemtuzumab), forcing a patient to…
What worries you most about living with multiple sclerosis? I’m catching up with a small survey by Can Do MS, an organization that promotes health and wellness education programs. The survey results, released in September, show that disease progression, financial concerns, and loss of independence are at the top…
Vumerity Approved in US as Treatment for RRMS and Active SPMS By my count, Vumerity is the 18th disease-modifying therapy (DMT) that the U.S. Food and Drug Administration (FDA) has approved for multiple sclerosis (MS). It’s one of very few approved for secondary progressive MS (SPMS). I find…
It’s time for another update on how I’ve been doing with my Lemtrada (alemtuzumab) treatments. The bottom line is that I’m doing well. Lemtrada is a disease-modifying therapy (DMT) delivered in two stages. The first stage entails a series of five daily infusions, while the second stage involves…
Higher Intellectual Ability, Early-life Physical Activity May Protect Against Cognitive Impairment in MS, Study Suggests The finding that physical activity provides a protective effect for cognitive abilities makes sense to me. I recently listened to a webinar discussing brain atrophy, which has a direct relationship with cognitive impairment, and…
A question raised by neurologist Gavin Giovannoni on the Barts-MS blog lit up my radar recently. Dr. G asked whether “elderly” people with MS should be treated differently than those who are younger. The question arises because a case of progressive multifocal leukoencephalopathy (PML), a serious brain disease,…
#ECTRIMS2019 – Are Injectables Inappropriate for Active Relapsing MS Treatment? Injectable disease-modifying therapies (DMTs) have been around for a long time. I took part in a Phase 3 clinical trial for Avonex (interferon beta-1a) in the mid-1990s. These treatments were the only game in town back then, and…
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