July 18, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: ATA188 in Progressive MS, Early Symptoms, Yoga, Rituximab EMBOLD Study of ATA188 in Progressive MS Is Given Go-ahead Is this another small step toward an MS cure? AT188 is an experimental therapy designed to kill cells infected with the Epstein-Barr virus (EBV). As you probably know, researchers have found a lot of evidence that EBV is connected…
July 15, 2022 Columns by Ed Tobias How to Avoid Trouble While Traveling Internationally With MS Medications The case of Women’s National Basketball Association star Brittney Griner is an important reminder for all of us who travel internationally with our medications: What you might be able to do in your home country, might not be the case in another. And the penalty could be severe. Griner was…
July 14, 2022 Columns by Stephen De Marzo I Had to Make Difficult Business Decisions After My PPMS Diagnosis On Feb. 28, 2021, my wife and I visited the MS clinic where I was diagnosed with primary progressive multiple sclerosis (PPMS). After receiving this life-changing news, I was an emotional wreck. While touring the clinic, I saw a person in a wheelchair go into an exam room.
July 13, 2022 Columns by Beth Ullah Fighting Fire With Fire: The War Between Lemtrada and My MS āSo can you lift me up/ And turn these ashes into flames/ ‘Cause I have overcome/ More than words will ever say.ā ā Kate Voegele My relapsing-remitting multiple sclerosisĀ (RRMS) diagnosis stole my life from me. The reverberations of this unwelcome thunderbolt were astounding. Coming to terms with a…
July 11, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: COVID-19, Predicting Progression, Early Treatment, Estriol Higher COVID-19 Risk Tied to 2 MS Therapies, Even With Vaccination According to this study, people being treated with Ocrevus had 3.6 times the risk of a breakthrough COVID-19 infection compared with people being treated with most other disease-modifying therapies. For those treated with Gilenya, the risk was increased…
July 8, 2022 Columns by Jamie Hughes Getting in Gear: Essential Equipment for an Excellent Beach Vacation The last few months have been a bit stressful, to say the least, and with the thousand and one worries and distractions I was facing, I couldnāt help but think of the opening lines of a William Wordsworth poem: āThe world is too much with us; late and…
July 8, 2022 Columns by John Connor Living With MS: ‘That Was the Week That Was’ Truly Awful Monday Unlike Prince, my Monday wasnāt manic. It was barreling along quite sedately until my wife, Jane, casually noted, “Remember, youāve got a dental appointment on Wednesday morning.” Er, no, I hadnāt remembered. It was somewhat churlish of me, as Iād been waiting for this appointment for nigh on…
July 8, 2022 Columns by Ed Tobias Trial Results a Setback for US Approval of Nabiximols for MS Spasticity This news seems disappointing: A Phase 3 clinical trial of nabiximols ā which is available under the brand name Sativex in several countries, including Canada and most of Europe ā has failed to meet its primary goal of reducing leg spasticity in people with multiple sclerosis (MS). Nabiximols…
July 7, 2022 Columns by Benjamin Hofmeister The MS Paradox Results in Many Conflicting Feelings āThanks, I hate it.ā Odd way to begin a column, I know. I suppose Iād better explain myself. That phrase regularly appears in memes and other pop culture media as an expression of dislike for an image or tweet. No one seems to know where or from whom it…
July 6, 2022 Columns by Beth Ullah While Living With MS, Good Planning Is Key to Avoiding Chaos āWithout leaps of imagination, or dreaming, we lose the excitement of possibilities. Dreaming, after all, is a form of planning.ā ā Gloria Steinem For as long as I can remember, my father has always had a saying: “Perfect planning prevents piss-poor performance.” Much to my husband’s frustration, though, I’m still…
July 1, 2022 Columns by Ed Tobias A New Gift Helps Me Stay Cool in the Summer Heat OK, I know I look silly wearing this ā maybe even scary ā but the Father’s Day gift I received from my son and his family is really cool, especially for someone with multiple sclerosis. Just in time for the hot days of summer, I now have a…
June 30, 2022 Columns by Stephen De Marzo Fatigue Was One of the First ‘Tells’ of My Primary Progressive MS In poker, a tell refers to a change in an opponent’s behavior or demeanor that may offer clues about the cards they’re holding. This could be a facial movement, an unusual breathing rhythm, an unconscious shift in body position, or a strange monetary bet. Recognizing a player’s tells may help…
June 29, 2022 Columns by Beth Ullah Managing Fatigue and Other Vacation Tips for People With MS āA holiday is an opportunity to journey within.ā ā Prabhas Last week was only my second weeklong holiday since my relapsing-remitting MS diagnosis in 2017. My husband and I have had weekend getaways here and there, mainly to visit family. Of course, COVID-19 has placed a huge restriction…
June 27, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: aHSCT, NICE Guidelines, ED, Neural Sleeve aHSCT, Stem Cell Therapy for RRMS, Troubled by Unknowns, Paper Says This research team says more studies are needed before aHSCT should be used for people with MS. But this has been the standard response for years to those who have seen benefits with stem cell transplants. Yet there…
June 24, 2022 Columns by John Connor Fall Down, Can’t Get Up Again So Iām at my multiple sclerosis (MS) exercise class working out on a sit-down bike. Yes, I know, by their very nature bikes tend to be of the sit-down variety, but for us lot in wheelchairs, these bikes are designed so we can roll up to them and have…
June 24, 2022 Columns by Ed Tobias Why I’m Giving 3 MS Medications Another Try Over the many years I’ve lived with multiple sclerosis (MS), I’ve used several medications to treat my MS symptoms. Some have helped, some haven’t, and some worked at first but then lost their efficacy. I recently returned to three of them that I’d stopped using for various reasons.
June 23, 2022 Columns by Benjamin Hofmeister Comparing Cases of Multiple Sclerosis Leads to a Logical Fallacy If you werenāt aware (I wasnāt), last Friday, June 17, was National Eat Your Vegetables Day. The day wasnāt created to tout any special diet per se, but to increase awareness of the benefits of vegetables in a healthy diet. If you were already aware of those benefits, then…
June 22, 2022 Columns by Beth Ullah Grappling With the Sensory Overload That Can Come With MS Imagine this scene: There’s a rowdy crowd of nearly 40,000 people in a rugby stadium with music blaring over the Tannoy speakers. Newfound numbness spreads throughout the majority of your body, and on top of that, you can hardly see. That was the perfect myriad of factors to elicit my…
June 20, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Vidofludimus Calcium, Foralumab, Exoskeleton, Dysport Vidofludimus Calcium Safely Reduced RRMS Brain Lesions Vidofludimus calcium, also called IMU-838, is an oral therapy designed to reduce the activity of B- and T-cells. These are immune cells believed to be responsible for the inflammation that results in MS damage. In this small study, active lesions ā including…
June 17, 2022 Columns by Jamie Hughes Just Because Itās Broken Doesnāt Mean It Isnāt Beautiful I recently did a little research to write an article reflecting on a photograph of the Library of Celsus. This marvelous piece of architecture was commissioned by a Roman consul named Gaius Julius Aquila as a funerary monument for his father. It was once home to…
June 17, 2022 Columns by John Connor Five Years of Writing This Column. What a Surprise Compared with living with multiple sclerosis (MS), the anxiety of what on water (Earth has always struck me as a misnomer as water comprises 71% of our planetās surface) I’m going to write about next week is but a slight fluttering. Yer, yer, I know; underneath itās…
June 17, 2022 Columns by Ed Tobias She Disclosed Her Illness and Got the Job It’s a decision most of us with a chronic illness have to make sooner or later: When do we disclose our illness, and to whom, and how do we do it? Thirty-one-year-old Katie Coleman faced that decision not long ago. Coleman has stage 4 kidney cancer, and, in April, she…
June 16, 2022 Columns by Stephen De Marzo The Journey Toward My Primary Progressive MS Diagnosis When I turned 50 in 2013, I blew out the candles, and bam! I was diagnosed with type 2 diabetes. I started seeing an endocrinologist and a neurologist, taking daily diabetic medications, and testing my blood sugar every day. At that point, I was not physically disabled in any…
June 15, 2022 Columns by Benjamin Hofmeister I No Longer Feel Guilty for Sharing Good News I’m heading to the beach with my family soon. Not a resort, or any sort of popular, touristy destination. Far from it, in fact. We like to go to the old family beach house on Floridaās Forgotten Coast, where I went as a child and now want my…
June 15, 2022 Columns by Beth Ullah Just Because We Aren’t Relapsing Doesn’t Mean We Are Symptom-free In relapsing-remitting MS, relapses and exacerbations involve a worsening of symptoms or the appearance of new ones for 24 hours or more. My disease baseline has changed many times over the years, but has never returned to how it was before my symptoms began. I’m intrigued by how…
June 13, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Evusheld, Immunotherapy, Blood Test, Aubagio Evusheld Boosts Antibodies Against COVID-19 in Vaccinated Patients Research has shown that the COVID-19 vaccines have been effective for people being treated with disease-modifying therapies, except for those that target B-cells, such as Ocrevus (ocrelizumab), Kesimpta (ofatumumab), and Rituxan (rituximab). If this very small study of 18 people proves…
June 10, 2022 Columns by John Connor My Right Arm Is Going to Look Really Young I’ve just received four intramuscular Botox injections in my right arm to relieve the muscle spasticity that comes with multiple sclerosis. (OK, it wasnāt actually Botox, but Dysport, or abobotulinumtoxinA, another medication derived from the botulinum toxin to block muscle contractions.) And “my right arm is going…
June 10, 2022 Columns by Ed Tobias Does Medical Marijuana Help the Pain That Comes With MS? Will your doctor approve you to buy medical marijuana (MMJ)? Two of mine will and one won’t. The doctor who won’t, a primary care physician who works within a medical group, told me it’s the group’s policy. The problem, she explained, is that there are no guidelines. How do you…
June 6, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Ublituximab, Lyvispah, Diet Study FDA Decision on Ublituximab for Relapsing MS Pushed to Yearās End Ublituximab is similar to Ocrevus (ocrelizumab) and Kesimpta (ofatumumab), which also target B-cells, the immune cells that play a role in the inflammatory attacks that harm the central nervous system of people with MS. Each of…
June 3, 2022 Columns by Jamie Hughes How I’m Making the Most of My Limited Energy as Someone With MS The last few years have been rough for a whole host of reasons, and I think itās safe to say that most of us in the United States feel utterly lost and burnt out. There’s no shortage of things to be stressed about and afraid of. I feel like…