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 Jamie Hughes An Interview With Writer Edith Forbes: Living With MS Last year, I got the chance to read and review Edith Forbesā medical memoir, “Tracking a Shadow.” I thought it was an encouraging and thoughtful work, so I contacted her by email for an interview to share her thoughts with readers of this column. Forbes graduated from Stanford…
April 22, 2022 Columns by John Connor The Tricks of Intermittent Catheterization When Youāre in a Wheelchair For the few of you lot lucky enough not to know about intermittent catheterization, itās shoving a thin bit of plastic up the old (in my case) urethra so that you can pee. I am well aware of how bad plastic is for the planet, but in my open-and-shut…
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 20, 2022 Columns by Beth Ullah MS and Emotions: Pessimism vs. Realism in Life With Chronic Illness There is an ongoing difference of opinion between my husband and me regarding my general outlook on life. I consider myself to be a realist, whereas he thinks I tend to err on the side of pessimism. I’m an overthinker. I’ve always felt things incredibly intensely. Interestingly, when I read…
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 John Connor A Winning Belt Turns Into WrestleMania It was a moment of clarity. Unfortunately, my attempt at making a bright, clear consommĆ© has for the moment turned into a muddled chowder! Even worse, it was writing this column that started it. Iāve written so often in this column about using my Molift assistive device for transfers…
April 15, 2022 Columns by Ed Tobias Upon Reflection, I’m Determined to Seize the Day Do you think about death? I do ā a lot. I mean, like almost every day. Don’t get…
April 13, 2022 Columns by Beth Ullah Pain and Positivity: My Experience With Plasmapheresis “‘Cause I would never break your heart/ I would only rearrange/ All the other working parts will stay in place.” ā Biffy Clyro, a Scottish rock band If youāve spent any time in a hospital, you know that it never gets completely dark. Thereās always a light flickering somewhere, a…
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 Jamie Hughes ‘Nothing Gold Can Stay,’ and Thatās OK In the South, we have a tendency to cram words together to create a single gigantic one, a kind of linguistic Pangea, if you will. The one Iāve been using a lot lately is āusetacould,ā a condensed form of the phrases āI used to be able toā and āI once…
April 8, 2022 Columns by John Connor ‘Top Gear’: Unfortunately, Iām a Backward-leaning Jeremy Clarkson Before anyone in the U.S. asks who this Jeremy Clarkson fella is, know that petrol heads in your country know exactly who he is. Indeed, the Brit motoring show “Top Gear,” at its height a few years ago, made him and his fellow presenters stars the world over. It…
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 6, 2022 Columns by Beth Ullah The Building Blocks of Becoming a Busy Bee āSerendipity. Look for something, find something else, and realize that what you’ve found is more suited to your needs than what you thought you were looking for.ā ā Lawrence Block When the world was thrown into lockdown at the dawn of COVID-19, I was already an old hand at functioning…
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 John Connor Old Friends, Broken Chairs, UTI Admissions, and Redemption The week started with a bang, albeit with a hint of underlying anxiety. Friends and former work colleagues gathered during the first days of spring to chat in my sun-lathered back garden in South London. COVID-19 lateral flow tests had all been passed. Previously, weād spent years working together on…
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 John Connor The Heel That Won’t Heal The dull throbbing always hits a crescendo “in the wee small hours,” as Mr. Sinatra ā or rather his songwriters ā so aptly put it. Iām referring to a wound thatās been with me for over a year now. True, it disappeared for a teeny while, when my heel…
March 25, 2022 Columns by Ed Tobias One Month of MS Awareness Isn’t Enough I’m changing my mind about MS Awareness Month ā at least a little ā 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 Jamie Hughes There’s No Such Thing as Perfect We are a three-cat household because, well, felines are awesome. Theyāre entertaining and sweet. They love to give cuddles. And theyāre fairly self-sufficient ā no baths or walks necessary. Just keep food and water in ample supply, and theyāre good to go. The only problem? Litter boxes. We have this…
March 18, 2022 Columns by John Connor Everything Last Week Did Come in Threes My week is never exactly easy, but it’s much harder for my family. Not only do they have to deal physically with my ever-enlarging lump of flesh, thereās also my verbal diarrhea to contend with. Then last Tuesday, it wasnāt just the verbal kind. Turns out my bowels began to…
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 16, 2022 Columns by Beth Ullah The Visible and Invisible Reflections of MS Ā Ā Ā “Mirrors donāt lie. They only show a part of truth.” ā Lara Biyuts I’ve written about how my reality feels jagged compared with actual reality. I wrote, “The woman looking back at me isnāt whom I perceive myself to be.ā Iāve been pondering this recently. The realism of reality With…
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 John Connor Can I Really Blame MS for Everything I Say? It wasnāt an argument; it was a reality check. I was happy, nay, self-indulgent. Within a day, the olā stand-up show that I produced at Londonās Comedy Store for 30 years had gotten another booking at a countryside marquee just outside the city. I mustnāt disparage, as itās our…
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 9, 2022 Columns by Beth Ullah Lyrics and Loving Myself: Rediscovering My Lost Voice āMost of the time, the greatest rewards come from doing the things that scare you the most. Maybe you’ll get everything you wish for. Maybe you’ll get more than you ever could have imagined. Who knows where life will take you? The road is long, and in the end, the…
March 7, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: ‘Cog Fog,’ Tolebrutinib, Ublituximab, Spinal Atrophy #ACTRIMS2022 ā 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…