February 25, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Early DMT Use, Aubagio vs. Tecfidera, Lipoic Acid Study, MS Forums Early Use of High-efficacy DMTs of Long-term Benefit to MS Patients, Real-world Study Reports The question of whether to start treating multiple sclerosis (MS) with an older, less effective disease-modifying therapy (DMT) and then move to a more effective one — or use a heavy-hitting medication right…
February 22, 2019 Columns by Ed Tobias My Lemtrada Journey and a 90-minute School Bus Ride My wife and I joined our son and his family on a tour of a Southwest Florida nature preserve today. It required riding on an old school bus-swamp buggy for a little over an hour and a half. There were plenty of gators, wild hogs, egrets, and storks in…
February 19, 2019 Columns by Ed Tobias I’m Living With MS, I’m Not ‘Battling’ It A former colleague recently asked me, “How are you doing in your battle with MS?” It was a legitimate question, not one of those throwaway lines of mock concern that we often hear. We were discussing the death of a former colleague who had been diagnosed with MS in…
February 18, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Misdiagnosing MS, Gilenya Relapse Study, Ocrevus in England, Estimate of Americans with MS Doubles Almost 1 in 5 People Wrongly Diagnosed with MS at Two Specialized Centers in US, Study Finds We know that MS is a difficult disease to diagnose, but is it really possible that 20 percent of the MS diagnoses are wrong? Apparently so. This study reports that…
February 15, 2019 Columns by Ed Tobias 4 Things I’ve Learned About Paying for MS Medications Are you having trouble paying for MS medications? If so, you’re not alone. People change or lose their insurance, and plans change the medications they cover from year to year. Your neurologist may change your medication without realizing that moving you from an injection to an oral med may…
February 11, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Marijuana and MS, MS Solutions Contest, MS Diagnosis Delays, Medicare DMT Costs Medical Marijuana ‘Can Help Everyone,’ Says Director at Maryland Cannabis Facility Keeping in mind that the person quoted in this article, Mr. Castleman, is growing medical marijuana to make money, I wouldn’t expect him to say anything else. On the other hand, I firmly believe that some forms of…
February 8, 2019 Columns by Ed Tobias DMT Approvals for Medicare Users Decline While Costs Rise, Study Shows This probably won’t come as a surprise to you if you’re on Medicare: It’s getting harder to obtain approval for many of the disease-modifying therapies (DMTs) prescribed for people with multiple sclerosis (MS). I see complaints about this all the time on social media. Now, research reported in…
February 5, 2019 Columns by Ed Tobias Have You Joined Our MS Forums Yet? It’s been about nine months since we created the MS Forums section on the Multiple Sclerosis News Today website. It’s a place designed to host conversations about our MS experiences and to find some answers from reliable sources when you have a question. You can even begin your own…
February 4, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: MS Pain Research, Myelin Studies, Antibody Trial MS Patients Sought to Test Alternative Chronic Pain Treatment Methods Do you have serious pain issues along with your MS? If so, you might be interested in this study that’s looking for participants. By the way, who says that pain isn’t an MS symptom? A clinical trial…
February 1, 2019 Columns by Ed Tobias Why Aren’t You Using an MS Medication? I see a lot of answers to the question about why people stop, or refuse to start, an MS medication. “Thinking of stopping the…meds. Sick of the shots and how they hurt to take them” “I stopped all of them….all multiple times. It…
January 29, 2019 Columns by Ed Tobias New Study Supports Hitting MS Fast and Hard The question of how quickly to start a disease-modifying therapy (DMT) after a multiple sclerosis (MS) diagnosis is one that I frequently see when I browse online. It goes hand in hand with questions about which DMT is best to start with. There are many things to consider when…
January 28, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Herbicide and MS, ‘Incredible’ Foot Stimulators, Tysabri and Brain Shrinkage Herbicide Called Linuron Seen to Trigger Inflammatory Signals Linked to MS in Study This is only a mouse study, but this herbicide has been banned in Europe because of health concerns. Its effects seem worthy of further investigation. The herbicide linuron, commonly used with other herbicides, insecticides,…
January 25, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: HSCT vs. DMTs, Mindfulness for MS, Ocrevus and T-cells, Pregnancy Guidelines Blood Stem Cell Transplant Better than DMTs at Reducing Risk of Disease Progression in RRMS Here’s more evidence that hematopoietic stem cell transplant (HSCT) works better than some disease-modifying therapies (DMTs) at reducing multiple sclerosis (MS) progression. In this study, only three of 52 patients in the…
January 22, 2019 Columns by Ed Tobias Selma Blair Is Posting About Her MS Again — Is This Good or Bad? Last October actress Selma Blair revealed that she’d been diagnosed with multiple sclerosis (MS). She did it by posting the announcement on her Instagram account. Back then she wrote, “I have MS and I am ok.” She described her symptoms in some detail, but her overall viewpoint was generally…
January 18, 2019 Columns by Ed Tobias Mindfulness: Putting Mind Over MS Can you use your mind to attack your MS, just as you use things such as medications and physical therapy? Some people who believe in the benefits of mindfulness think you can, at least to some extent. Mindfulness is defined as “the basic human ability to be fully present, aware…
January 15, 2019 Columns by Ed Tobias US Hospitals Are Now Required to List Service Prices. But Does That Help? Since the first of this year, hospitals in the U.S. have been under new government orders. They must make their “list price” for specific services — things like an MRI or an infusion — available to the public by posting them online. The requirement was announced last summer. In…
January 14, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Stimulator for Spasticity, Tysabri Dosing Trial, Mobility Devices Contest, Stem Cell Phase 2 Trial WeHealth, PathMaker Collaborating to Develop MyoRegulator as Noninvasive Treatment for Spasticity I’m one of the many people with multiple sclerosis (MS) for whom spasticity is a significant problem. This is a nonmedicinal approach to dealing with it. I hope it doesn’t take too long to make this…
January 11, 2019 Columns by Ed Tobias A Novel Idea for MS Living: An Accessible Add-on for a House When my wife and I were remodeling our two-story home many years ago, we made a few accessibility changes with my MS in mind. For example, we enlarged a first-floor half-bath to include a roll-in shower. We also installed a higher toilet and made sure there was space to fit…
January 8, 2019 Columns by Ed Tobias US Airlines Are Now Tracking Wheelchairs They Break or Lose It’s happened to me, and if you fly with a scooter or a wheelchair, I bet it’s happened to you, too: a busted or missing set of wheels on arrival. On a flight from Washington, D.C., to Venice, my scooter went to Copenhagen. On a flight from…
January 7, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Stem Cell Transplant, Cooling Therapy and Exercise, FDA OK for Generic Tecfidera, Top Stories of 2018 Stem Cell Transplant Lessens Disability and Relapses in RRMS Patients, Phase 2 Trial Shows Here’s another study indicating that a stem cell transplant should be a treatment choice available to all MS patients where medically appropriate. Isn’t it past time to press harder on the stem cell…
January 4, 2019 Columns by Ed Tobias MS Treatment Decisions Can Cause a ‘Gambler’s Dilemma’ One of the toughest decisions facing someone with MS is whether to begin treatment with a disease-modifying therapy (DMT). Equally tough, I think, is deciding which DMT road to travel — because there are three roads that can be followed. One path starts you on a simple, first-level medication. These…
December 21, 2018 Columns by Ed Tobias Shots, Infusions, or Pills for Your MS? There are more than a dozen disease-modifying therapies available to treat MS. Some are shots, some are infusions, and some are pills. Some are more effective than others. The marketing intelligence company Spherix Global Insights regularly surveys which of these treatments are being used by neurologists and…
December 18, 2018 Columns by Ed Tobias Thinking About Quitting My Bioness L300 The L300, made by Bioness, is a functional electronic stimulator. It’s a cuff that I wear just below my left knee. It stimulates a nerve that lifts my foot and helps keep it from dragging. When I first got my L300 in 2012, it was a blessing.
December 17, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Cannabis, Switching Interferons, Brain Stimulation by Smartphone, Lipoic Acid MS Patients Report Beneficial Effects of Cannabis with Few Side Effects, Survey Shows This survey agrees with what I’ve found in my limited experience with cannabis (in my case, CBD oil). A small amount can ease some of my spasticity and help me to get a better…
December 14, 2018 Columns by Ed Tobias Pregnancy, DMTs, and MS: A New Study Many years ago a woman I know who has multiple sclerosis (MS) became pregnant. After her child was born her MS became significantly worse. There have been many studies on the impact of pregnancy on someone with MS, with most concluding that the number of MS relapses are reduced…
December 11, 2018 Columns by Ed Tobias Consensus Lacking on How MS Medications Are Prescribed in the UK Living in the U.S., where disease-modifying therapies (DMTs) seem to be prescribed as a matter of course to people with multiple sclerosis (MS), I was surprised that it doesn’t seem to be the case across the pond in the U.K. An article just published on the Multiple…
December 10, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Palliative Care, Lemtrada and Lung Bleeding, Stroke Risk, Rebif Report Use of Hospital Palliative Care by MS Patients in US Rose 30-fold Between 2005-14, Study Finds Palliative care emphasizes prevention and relief of a patient’s suffering. Its goal is to improve the quality of life of that patient and his or her family. It’s usually thought of…
December 7, 2018 Columns by Ed Tobias These Doctors Have the Right Idea, but … Patients want to be more involved in their healthcare, but it’s not an easy process. I’ve written before about the hurdles we have to overcome to get some healthcare providers to communicate with us, to listen to what we have to say about our medical problems, and even…
December 4, 2018 Columns by Ed Tobias How Worried Should We Be About MS Medication Side Effects? Over the past couple of weeks, two warnings have been issued about side effects of multiple sclerosis (MS) medications. First, the U.S. Food and Drug Administration warned about a slight risk of seriously worsening MS symptoms if someone who is using the disease-modifying therapy (DMT) Gilenya (fingolimod) stops using…
December 3, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: MRI Dyes, Lipids and MS, Gilenya Advisory, Possible Stem Cell Trial Artificial Intelligence May Help Reduce Dosage of Gadolinium in MRIs, Researchers Suggest There’s been concern recently about the accumulation of gadolinium in the brains of people who’ve had MRIs. Gadolinium is the dye that’s used to provide the “contrast” that can highlight lesions in the brain that might…