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.I’m coming up on the second anniversary of my Lemtrada (alemtuzumab) treatment. My first infusion round was the first week of December 2016. Round 2, delayed by four months, was done last April. So, it’s time to update my Lemtrada journey for you. Lemtrada, in case you’re not…
If you are being treated with Gilenya, take note. The U.S. Food and Drug Administration is warning that if you stop using Gilenya (fingolimod), there’s a chance your MS could become worse. The FDA issued a safety alert saying that this only happens rarely, but when it does, the…
We all know how expensive health insurance can be. On the social media sites that I browse, I always see stories of people with MS who find themselves in a bind due to the healthcare system in the U.S. Some can’t work because their MS has robbed them of…
MS-specific Lineage of Oligodendrocytes May Provide New Hints on MS Development Our immune system, according to this study, may not be the only thing playing a role in the development of our MS. The same cells that produce the myelin that coats our nerves may also be…
We’ve all been there. That “uh-oh” feeling hits and you know you’ll be in trouble if you can’t find a restroom, fast. You hope the clerk in the store with the “Restrooms for Customers Only” sign will make an exception if you tell her it’s about to run down…
I’m writing again about someone with MS who was blocked from a handicapped parking spot by someone who isn’t handicapped. I know, it happens all the time. But this time was a little different. The spot was blocked by a television news crew. And that struck a nerve…
Exercise Program Based on Ballet Improves Motor Control and Balance in MS Patients, Study Reports It makes sense. Yoga helps multiple sclerosis (MS) symptoms, as do Pilates and simple stretching. So why shouldn’t ballet? After all, it requires similar balance and motor control. This study only involved…
A tragic car crash involving a man with MS is a reminder that we all should be just a little bit more careful than the average driver when we get behind the wheel. The accident happened in early October on a street in Eugene, Oregon. As reported by…
MS medications are expensive in the United States. We all know that. We also know that some of those expensive meds are a lot less expensive in places like Canada and Mexico. Now comes a novel idea from the nonprofit health insurance provider PEHP, which covers state workers and…
NICE Postpones Final Opinion on Adding Ocrevus to Public Health System for PPMS Patients in UK This last-minute reprieve from the agency that dictates which medications may be prescribed for patients of the U.K.’s National Health Service (NHS) is welcome news. Last summer, the National Institute for…
I’ve written several times about MS and the flu. I’ve always encouraged people to get an annual flu shot, but I know some people, for whatever reasons, don’t get one. I know I’ll never convince some of you of the benefits of this shot, no matter how much…
By now you may have heard that actress Selma Blair has revealed that she has multiple sclerosis (MS). That took a lot of guts. Those of us who share her diagnosis might learn a few things from what she’s shared and how she’s shared it. Blair may be…
Stanford Researchers Open Medical Cannabis Company with Oral Therapy for MS Pain, Spasticity as Initial Goal Let’s be clear up front. There’s no indication that you’ll be able to buy a cannabis pill from this company anytime soon — or ever. The company’s website says that testing…
“Deceptive” and “false” are two words used by the U.S. Federal Trade Commission (FTC) to describe marketing claims by two stem cell treatment clinics in California. According to an FTC complaint, the clinics had been advertising that they were using amniotic stem cell therapy to successfully treat serious diseases, including…
Flying isn’t what it used to be, as everyone who’s taken a flight in the past 15 years or so knows. Flyers with disabilities can have a particularly challenging time dealing with airports, airlines, and aircraft. Airports are crowded and stretch forever. Airplanes are crowded, their seats are small,…
Please forgive me, but I’m too tired to write tonight. My wife had surgery last week, so I’ve been doing a couple of things that I haven’t done much in the 42 years since our wedding: shopping and cooking. (Well, making Harris Teeter ready-to-heat meals, that is. For…
People with multiple sclerosis (MS) rarely get the opportunity to talk to the people who design their medications. But a new collaboration is providing that opportunity to a few of us. The Accelerated Cure Project for Multiple Sclerosis (ACP) and pharmaceutical manufacturer EMD Serono have begun working together…
Is getting from home to a healthcare appointment a pain in the butt for you? Do you have to search for someone to take you? Do you haul yourself into your car and hope that you can find a nearby parking spot? Is public transportation impossible to find where…
Lower Fatigue Reported by MS Patients After aHSCT in Canadian Study Fatigue affects 90 percent of people with MS. It certainly impacts my life. This study, though very small, reports a 36 percent reduction in the median modified Fatigue Impact Scale (mFIS) score three years after autologous…
Many of us have received help to pay for our MS medications. Now there’s a chance that assistance could be threatened. A recent article in the The Wall Street Journal reports that U.S. government prosecutors are looking into whether some pharmaceutical companies’ patient assistance programs are on the wrong…
We all know how difficult it can be to find an accessible parking spot — one that allows us to park and get from our car to where we’re going with a minimum number of steps. There aren’t many of these spots in most parking lots, and sometimes the…
Often-overlooked MRI Signal May Aid in Early Diagnosis of MS, Other Brain Conditions, Study Suggests A part of an MRI scan that radiologists call a “background signal” is what’s being looked at. It’s usually ignored because the signal doesn’t seem to change even when a patient is…
Ocrevus (ocrelizumab) is a serious disease-modifying therapy. It has the potential to deliver a major blow to a patient’s MS, but it also carries the possibility of severe side effects. The protocol for Ocrevus requires different doses on different infusion dates, following a specific treatment schedule. It’s also…
I never thought I’d want a wearable internet device until I got an Apple Watch for my birthday. One of its neat apps tracks the laps that I swim, the steps that I (try to) take, and my pulse rate. The watch can even link up with some high-tech…
Phase 3 Trial in the UK Soon to Test Statin, Simvastatin, in Slowing SPMS Progression I’ve taken a statin medication for years to keep my cholesterol in check. Now, a study is getting underway to see if one statin pill can also be used to treat MS. It’s particularly…
Is quadrupling the price of a medication “moral”? One pharmaceutical CEO not only thinks so, but he also says it’s a “moral requirement.” The medication is liquid nitrofurantoin, an antibiotic mixture that’s primarily used to treat bladder and urinary tract infections. Since UTIs can be a problem for people…
Editor’s note: Shortly after this column was published, Mylan pharmaceuticals announced it will begin distributing Dalfampridine Extended-Release Tablets, 10 mg, the authorized generic version of Acorda’s Ampyra. There’s been no word, yet, on what it will cost or how soon the generic will become available in pharmacies. A few…
The start of flu season here in the United States is just a few weeks away. It’s time for my wife and me to get our flu shots, just as we have for as long as I can remember. My neurologist and our primary care physician both recommend the…
How B-cells Work to Promote T-cell Attacks on Myelin That Lead to MS Detailed in Study I keep a close eye on reports about B-cells and T-cells because they’re the targets of Lemtrada, which is my current disease-modifying therapy. (The DMT Ocrevus targets B-cells alone). So, this…
Ocrevus, a disease-modifying MS treatment that’s only been on the market a little less than 18 months, appears poised to be a cash cow for its maker, Genentech. The research firm Spherix Global Insights, which analyzes trends in the pharmaceutical industry, predicts that Ocrevus is “poised to…
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