August 31, 2018 Columns by Ed Tobias Checking Out a Dating App for People with Health Problems Does your MS limit your ability to find a date? (Courtesy of Lemonayde) Dating isn’t a concern of mine, since I turned 70 earlier this month and have been happily married for 42 years. But younger, single folks with MS regularly post concerns about starting relationships on various…
August 28, 2018 Columns by Ed Tobias Help Design a Mobility Scooter I’ve been using a mobility scooter for about 10 years. I use it anytime I need to walk more than about half a city block. I throw it in the back of my SUV, I’ve taken it on planes and cruise ships (I’ve ridden it in 15 or 16…
August 27, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Cannabis and Inflammation, Exercise and MS, a New MS Subtype Cannabidiol Increases Inflammatory Suppressor Cells, New MS Mouse Study Shows There’s quite a bit of anecdotal evidence that the use of marijuana can help reduce the symptoms of multiple sclerosis (MS). Here’s a report about a study that suggests a reason that could be happening. Non-psychoactive cannabidiol (CBD),…
August 24, 2018 Columns by Ed Tobias Your MS Med’s Copay Could Be More Expensive than Paying Cash I get my medications the old-fashioned way. When I need to fill a prescription, I either go to the drug store or use a mail-order pharmacy — and usually, I have a copay. Sometimes the copay is just a few dollars, but sometimes it can be a few hundred.
August 21, 2018 Columns by Ed Tobias Male or Female Doctor? Is One Better than the Other? The neurologist who treats my MS is a woman. So is my primary care physician. I wouldn’t have it any other way, and an article in The New York Times makes me feel my decision is the right one. Patient studies tell the tale The Times article points…
August 20, 2018 Columns by Ed Tobias MS News That Caught My Eye Last Week: Lemtrada and B-cells, DMT Efficacy, Botox and the Brain, a Diet Recommendation Lemtrada Can Lower Number of B-cells Infiltrating Nervous System and Forming Clumps, Animal Study Shows I usually stay away from recommending articles about mice studies, but this article does a nice job of explaining how Lemtrada works and the role of B-cells in multiple sclerosis (MS). As…
August 17, 2018 Columns by Ed Tobias 2 Short Films Take Different Approaches to Portraying Life with MS Over the past week, I’ve come across two short films that are designed to show what it’s like living with MS. But they have two very different approaches. Interested in MS research? Sign up…
August 14, 2018 Columns by Ed Tobias Taking My MS for a Sea Ride I’ve been away for about a week, the first break of that length that I’ve had from writing about MS in about two years. Much of that time was spent on a trip from Long Island, New York, to Newport, Rhode Island, aboard the Mariner. Marine chart of…
August 13, 2018 Columns by Ed Tobias MS News That Caught My Eye Last Week: MMJ Chewing Gum, Hair Loss, Botox for Bladder Problems, MS Progression Prediction Hair Loss Seen in RRMS Patients Using Aubagio Often Temporary and Mild, Study Says I read a lot of questions on multiple sclerosis (MS) social media groups from people who are worried about hair loss caused by their disease-modifying therapy (DMT). Aubagio (teriflunomide) is one DMT with…
August 3, 2018 Columns by Ed Tobias Healthcare Is Expensive, So Why Don’t We Comparison Shop? If you’re going to buy a car, do you limit your shopping to just one car dealer? If you need gas, do you drive past three inexpensive service stations because someone told you to fill up at a fourth, where the price is much higher? I don’t think so.
July 31, 2018 Columns by Ed Tobias What I’ve Learned About Falling After 37 Years with MS Leaving a restaurant the other evening, I was stepping off an unusually high curb. Right cane down, left cane down, swing the right leg, swing the left leg, and … uh-oh. Down I go. I’d been asking for it. I’d needed to change the electrodes on the Bioness…
July 30, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Popular DMTs, Data Analysis Predicts MS, Remyelination Study Oral DMTs Still Common 1st Therapy for New MS Patients but Ocrevus Having Impact, Market Report Says Deciding on what therapy to use is a tough decision for people with MS and their doctors. That’s especially true for someone who is newly diagnosed. Do you go with…
July 27, 2018 Columns by Ed Tobias A Fall, a Scratch, and an MS Lesson Learned In mid-July, the woman who writes the Multiple ExperienceS blog had a little fall. As Jamie explains, her rollator went forward, but her feet didn’t. The fall left a small cut on her knee. Over the next few days, Jamie’s knee swelled, and a trip to her doctor,…
July 24, 2018 Columns by Ed Tobias Health Insurers Do Deep Data Dive to Estimate Your Healthcare Costs Every time you post something on social media, pay a bill online, or make an online purchase you leave behind little data footprints. Now, an extensive report by National Public Radio and the nonprofit news organization ProPublica is pulling the curtain back on companies who are…
July 23, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Predicting MS Progression, MS Links to Other Diseases, Cladribine, Diet Discussions Brain Iron Levels Correlate with MS Progression, Disability Risk, Study Shows Currently, doctors measure shrinkage in the brain as a way to predict physical and cognitive decline in people with multiple sclerosis (MS). But it takes a long time to see this brain atrophy on a standard…
July 20, 2018 Columns by Ed Tobias Are These Diseases Early MS Warning Signs? It’s not unusual to hear someone say, “I was diagnosed with MS in [fill in the year], but I probably should have been diagnosed five or 10 years earlier.” Now a study reports that during the five years before someone is diagnosed with multiple sclerosis (MS), it’s quite…
July 17, 2018 Columns by Ed Tobias My Lemtrada Journey: A Little Dip on the Roller Coaster I’m now three months past my second round of Lemtrada treatments, so it’s time for an update. I began Lemtrada (alemtuzumab) in December 2016, hoping it will be the last disease-modifying therapy that I’ll ever need to use. I’ve had peaks and valleys since this treatment began, thus…
July 16, 2018 Columns by Ed Tobias MS News That Caught My Eye Last Week: Fasting Study, ‘Bad’ T-cells, Brain Volume, Ocrevus in Scotland Missouri Trial to Examine if Fasting Alters Gut Microbiome and Immune System of RRMS Patients in Helpful Ways The impact of various diets on multiple sclerosis (MS) has been studied, but this new study will look into whether fasting has an impact. The researchers at Washington University…
July 13, 2018 Columns by Ed Tobias Medical Marijuana Could Mean Trouble for Gun Owners I’ve written before about medical marijuana (MMJ) and its use by those with MS. I’ve also written about how MS affects gun ownership. This column is about both MMJ and guns. Thirty-one states, plus the District of Columbia, Puerto Rico, and Guam have legalized the use of marijuana for medical use.
July 10, 2018 Columns by Ed Tobias MS Hope or MS Hype? This Writer’s Dilemma Let’s say there’s an MS study reporting that researchers have discovered a substance that seems to prevent nerve cell damage. But they’ve only studied this on mice. Or, there’s another study that claims that something can help reduce MS pain, but the study involves only 19 patients. Or, an…
July 9, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Medical Cannabis in Australia, Solvents and Common Pollution, Ocrevus and PPMS Medical Cannabis Favored to Treat MS Spasticity and Other Ills by Doctors in Australia, Survey Finds I’ve been thinking about using medical marijuana to treat my multiple sclerosis (MS) spasticity — specifically CBD oil. It appears that some healthcare providers would also think that’s a good idea. Most…
July 6, 2018 Columns by Ed Tobias Big ER Bills for Little ER Visits A couple weeks ago, I wrote a column about medical bills suggesting that you trust, but verify those charges. A few days ago, I read about a type of emergency room fee that’s hard to trust. It’s being charged by many hospitals, seemingly without consistency, and it can…
July 3, 2018 Columns by Ed Tobias ‘Low T’ and MS Risk in Men Statistics show that men are three times less likely than women to develop multiple sclerosis. Research has shown that men also develop MS at a later age than women and that their disease is more progressive. Could this all be related to “low T,” or low testosterone? Researchers…
June 26, 2018 Columns by Ed Tobias MS Patients Can Dress For Success When you have MS, finding a way to dress for success means more than just looking sharp. It means dressing to both look good and feel good about yourself while wearing clothing that’s easy to wear. Finding those clothes takes a little more effort than simply going into a…
June 25, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: A Genetic MS Link?, Spinal MRIs, MRI Payment Help, PPMS Study Researchers Discover How Key Genetic Risk Factor for MS Operates A genetic link to MS is something that some scientists have suspected for years. Now, there’s new research that targets a variation of a specific gene as possibly being that link. Scientists have uncovered the molecular mechanism…
June 22, 2018 Columns by Ed Tobias Do People Think Your MS Problems Are All in Your Head? Have you ever had a friend, spouse, or even a doctor tell you that you’re imagining your MS pain, your fatigue, or even your sexual problems? “You’re not trying,” they might say. Or, “You just need to exercise.” It happens all the time for many of us, and it’s…
June 18, 2018 Columns by Ed Tobias MS News That Caught My Eye Last Week: A Myelin Discovery; Comparing Gilenya and Tecfidera; Measuring a Fall Risk; Smoking, Obesity, and MS Discovery of ‘Fiery’ Cell Death Mechanism May Be MS ‘Game-Changer’ Researchers at the University of Alberta have discovered a process that may be responsible for destroying myelin. Better than that, they also think they have a way of limiting that process using a medication. The inhibitor, known…
June 15, 2018 Columns by Ed Tobias Getting Help Paying for Your MRIs It’s not unusual for someone with MS to have an annual MRI exam. Sometimes it’s even semiannual. And it’s not cheap. According to the website Healthcare Bluebook, an MRI of the brain, with and without contrast, can cost you anywhere from $826 to $4,780, depending on where you live…
June 12, 2018 Columns by Ed Tobias Is Your MS Ready for a Disaster? Hurricane season began on June 1 in the Atlantic region. For people living along the coast, as I do, it’s time to plan for moving quickly. For people with mobility problems, planning is essential since, as you know, moving isn’t something that we do quickly. I wrote…
June 8, 2018 Columns by Ed Tobias My MS Medical Bills: Trust, but Verify the Charges “Trust, but verify” was a key concept during the U.S.-Soviet nuclear negotiations of the 1980s. “Trust,” President Ronald Reagan would say, “but verify” that what’s being said is actually being done. I apply that same concept to my bank, trusting that it has all of my checking account information…