June 3, 2022 Columns by Ed Tobias A Road Trip From Florida to Maryland With No Bladder Incontinence After two days — 16 hours of it spent on the road — and 1,104 miles, I hadn’t had a single accident. My bladder control meds must’ve worked. The semiannual trip my wife and I take between Florida’s southwest coast and the suburbs of Washington, D.C. is never…
May 27, 2022 Columns by Ed Tobias Another Busted Cane Leads to a Search for Something Better A few weeks ago, my cane mutinied. I’ve been using canes for about 20 years — first one, and then a pair. I’m tough on them and put a lot of weight on them. I take them out in the heat, cold, and rain. I force them to rest on…
May 23, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: DMTs and Symptoms, Aquatic Exercise, Infections ‘Hidden’ Disabilities Fairly Common at RRMS Diagnosis, Study Finds This headline doesn’t report the full nature of this story. In addition to being “fairly common,” the research concludes that disease-modifying therapies (DMTs) have little effect on these so-called “hidden disabilities.” I don’t agree with that conclusion. Most of…
May 20, 2022 Columns by Ed Tobias Hoping for Medical Debt Relief? This Nonprofit Just Might Help It may sound like a joke or a scam, but there’s a nonprofit organization called RIP Medical Debt that might pay off your medical debt. Yep, all of it. According to the organization’s website, RIP Medical Debt has paid off more than $6.7 billion of other people’s medical bills…
May 16, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Music, Resilience, Childhood Abuse, Exercise Biogen, MedRhythms Working on Music Therapy for MS Gait Issues This is music to my ears. Sorry, I couldn’t resist, but I’m a big music fan. Music in my ears really motivates me when I’m exercising. So the idea of using computer-based music therapy to improve someone’s gait has…
May 13, 2022 Columns by Ed Tobias Hunt for EBV Vaccine Gets a Boost From NIH The National Institutes of Health (NIH) is joining the search for a vaccine to attack the Epstein-Barr virus (EBV). This is a big deal for people with multiple sclerosis, because carrying the virus is thought to play a significant role in the development of MS. In fact,…
May 9, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Cannabis, Keto Diet, Tysabri, MS Unknowns Cannabis ‘Highly Effective’ Against MS Symptoms, Some Users Report I would’ve expected many users to report that cannabis has been highly effective at treating MS symptoms, not just some. But comments about this study on the MS News Today Facebook page indicate that people have mixed results. Even…
May 6, 2022 Columns by Ed Tobias An Accessible Cruise With Family, Canes, and a Scooter Was a Breeze It’s not easy going for a cruise when a scooter and a couple of canes come along for the trip. I’ve done it with success a number of times in the past, and planning helps a lot. My wife and I just returned from our first first cruise since…
May 2, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: PoNS, MS Survey, Nerve Damage Biomarker, Tolebrutinib PoNS Device for MS-associated Gait Problems Now Available in US One clinical trial showed that MS patients who used the portable neuromodulation stimulator (PoNS) device as part of an exercise program had greater improvements in gait than those using only the exercise program. A second trial showed that those…
April 29, 2022 Columns by Ed Tobias Remembering My First MS Symptom What was your first MS symptom? Mine — the one that made me realize something was really wrong — was my inability to squeeze the toothpaste tube with my left hand one morning. Of course, there were earlier hints of trouble. I was unusually tired while attending a business…
April 25, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Bone Marrow Infusions, ATA188, Enhanced MRIs, Costs Progressive MS Trial Finds Repeat Bone Marrow Infusion Safe, Feasible Two bone marrow transplant studies are reported in this story. The first, a tiny trial of just six people, assessed the safety of this procedure, which involves harvesting cells from their bone marrow, then infusing them into the bloodstream…
April 22, 2022 Columns by Ed Tobias The High Cost of Living With MS I always knew that living with multiple sclerosis (MS) was super-expensive, but a new study is a real eye-opener. The study, published in the journal Neurology, puts the annual tab for MS in…
April 18, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Deep Brain Stimulation, IMCY-0141, Foralumab, Vumerity Select Brain Stimulation May Ease MS Tremor, But More Study Needed This is encouraging news for the large group of people with MS who are bothered by some sort of tremor. But the procedure to suppress these tremors isn’t simple. We’re talking about deep brain stimulation, where electrodes are…
April 15, 2022 Columns by Ed Tobias Upon Reflection, I’m Determined to Seize the Day Do you think about death? I do — a lot. I mean, like almost every day. Don’t get…
April 11, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Herpes, COVID-19, Exercise, DMT Studies No Link Between Herpes Infection and MS Risk in Genetic Study This is interesting because the Epstein-Barr virus is a member of the herpes family, and recently, a major study indicated a link between Epstein-Barr and MS. Yet, the study reported here concludes there is no link between herpes…
April 8, 2022 Columns by Ed Tobias Crossing the Lemtrada Finish Line I’m marking a big anniversary this month. It’s been four years since I finished the second round of treatment with Lemtrada (alemtuzumab), my final disease-modifying therapy (DMT). That means that, after about 60 monthly blood draws, I’m finished being stuck. Lemtrada is usually a two-phase series of injections, with…
April 4, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: GA Depot, Blood-brain Barrier, Mindfulness Use of GA Depot in Treating Progressive MS Given US Patent In the area of MS treatments, one major need is for medications that treat more than just the relapsing form of our disease. GA Depot might help fill that void. The U.S. patent the medication received says it’s…
April 1, 2022 Columns by Ed Tobias Dr. Glaucomflecken and Other Healthcare Jokers This column is being published on April 1. When I was in the journalism profession, that was a day we had to be on guard against pranksters who would try to trick us into reporting phony April Fools’ Day news items. So, I need to be very clear about this…
March 28, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: aHSCT, Cannabis, Smell Test, Telemedicine Stem Cell Transplant Gaining Ground as MS Therapy Option This comprehensive look at stem cell transplants by Multiple Sclerosis News Today writer Hawken Miller is one of the best overviews of the possible benefits and dangers and the current status of autologous hematopoietic stem cell transplantation (aHSCT) that…
March 25, 2022 Columns by Ed Tobias One Month of MS Awareness Isn’t Enough I’m changing my mind about MS Awareness Month — at least a little — thanks to “31 Days of MS.” Whether it’s an awareness month or a week, or whether it’s for MS or disabilities in general, I’ve never been a big fan of these types of initiatives. But this…
March 21, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: SPMS Transition, NVG-291, PIPE-307, Foralumab MS Doctors, Nurses in UK Struggle With Marking Transition to SPMS The issue highlighted in this story isn’t just a problem in the U.K.; it’s a universal MS problem. People with MS often ask how they will know when their illness has transitioned from relapsing to progressive. I respond…
March 18, 2022 Columns by Ed Tobias MS Nurses in UK Burdened by Heavier Caseloads, Survey Shows You might be wondering why a Yank like me is writing about multiple sclerosis care in the United Kingdom. It’s because a survey caught my eye the other day that I think deserves a closer look. The survey, conducted by the MS Trust and reported by MS News…
March 14, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Keto Diet, Milk and MS, Disability Progression, Neural Sleeve Ketogenic Diet Eases Symptoms, Aids Life Quality in Small RRMS Study This new report says that a ketogenic diet might help people with MS. It’s certainly helped my wife lose weight, but will it help my symptoms? I wondered about that in a recent ‘MS Wire’ column.
March 11, 2022 Columns by Ed Tobias Can My Wife’s Keto Diet Help My MS? For the past few months, my wife, Laura, has been following a ketogenic diet, and she’s lost a bunch of weight. But in addition to helping people slim down, the low-carb keto diet may have other benefits, including potentially for those with MS. A small study that will be…
March 7, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: ‘Cog Fog,’ Tolebrutinib, Ublituximab, Spinal Atrophy #ACTRIMS2022 – Cognitive Training Paired With tDCS Aids Patients A treatment to clear “cog fog” would be welcomed by many people with MS. Over 75% of us are troubled by cognitive problems. In this study, adding painless transcranial direct current stimulation to standard cognitive training improved results when compared…
February 28, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: aHSCT, Skin Cancer, Spasticity, NfL Blood Test #ACTRIMS2022 – Immune System ‘Reset’ by Stem Cell Transplant At the University of Ottawa, autologous hematopoietic stem cell transplantation (aHSCT) has been used to treat people with aggressive MS since the early 2000s, MS News Today‘s Marisa Wexler reports. This study, which reviewed 71 patients during that period, reports…
February 25, 2022 Columns by Ed Tobias A Health Insurance Address Change Sends Me Down the Rabbit Hole For my wife, Laura, and I, trying to change our address on our health insurance accounts last week was like following Alice down the rabbit hole. As Lewis Carroll wrote in the classic children’s novel “Alice’s Adventures in Wonderland”: “The rabbit-hole went straight on like a tunnel for some…
February 21, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Brain Atrophy, CD25, Neurodynamic Therapy, Anxiety Fatigue Severity in MS Predicted by Shrinkage of Certain Brain Regions For several years, I’ve been a believer, along with many neurologists, in the theory that it’s best to treat MS as quickly and effectively as possible. Though directed at only fatigue indicators, this research looking at brain atrophy…
February 18, 2022 Columns by Ed Tobias AXS Map Helps Crowdsource Venue Accessibility Across the Globe If you’re like me, you’re always wondering what obstacles you’ll need to overcome if you eat at a new restaurant or visit another venue you’ve never been to before. Will you physically be able to enter? If so, can you navigate once inside? Are the bathrooms accessible? You could…
February 14, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: aHSCT, Myelin Vaccine, Bone Health, MIND Diet Blood Stem Cell Transplant May Help Immune System Longer I’m a proponent of autologous hematopoietic stem cell transplant (aHSCT) to treat MS. The process entails extracting a patient’s own stem cells, usually from the bone marrow, treating them to kill immune cells that trigger MS attacks, and then infusing…