May 12, 2023 Columns by Ed Tobias My 5 wishes for the future of multiple sclerosis A recent post on the MS-Selfie blog asks and answers this question: What is the “greatest unmet need” concerning multiple sclerosisĀ (MS)? Professor Gavin Giovannoni, the London-based neurologist who writes that blog, lists five unmet needs, many of which I agree with. But those needs are from the viewpoint…
May 11, 2023 Columns by Benjamin Hofmeister Multiple sclerosis and speech are not on friendly terms for me I used to sing ā a lot. Donāt worry, I didn’t miss my true calling. I could carry a tune, but that was about it. I was loud, and just like arguing, volume can make up for a lack of skill. My voice might not have been the best,…
May 9, 2023 Columns by Jamie Hughes A different perspective can help us make the most of delays, setbacks As hard as it is to believe, another school year is drawing to a close. It still somehow takes me by surprise every time. It feels like just yesterday that I was buying new shoes and helping my eldest navigate the halls of high school for the first time, and…
May 8, 2023 Columns by Ed Tobias MS news notes: Ocrevus, assistive devices, virtual reality, Briumvi Welcome to āMS News Notes,ā a Monday morning column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: Study: Starting Ocrevus early is better than later The MS News Today story “AAN 2023: Early…
May 5, 2023 Columns by John Connor Reflections from the front line: My recovery from muscle deconditioning Iām worried that my tales of recovery may have gotten a tad boring, so let me liven things up with the weirdest thing I now have to live with. The head of my “thing” has been sliced half an inch vertically. By “thing,” I of course mean my penis! And…
May 5, 2023 Columns by Ed Tobias Artificial intelligence moves into the MS exam room. But should it? Is artificial intelligence (AI) intelligent enough to help make a diagnosis of multiple sclerosis (MS)? Apparently so, and more. In the United Kingdom, a project named AssistMS is studying whether AI can be used to detect and highlight changes on brain MRIs. An algorithm software called…
May 4, 2023 Columns by Benjamin Hofmeister Fatigue from MS is hard to both explain and understand Everyone’s multiple sclerosis (MS) is unique to them. The different disease types, lesion loads, and lesion locations are a few reasons why our symptoms are so variable. We with MS all live in the same neighborhood, just in different houses. If there were such a thing as…
May 1, 2023 Columns by Ed Tobias MS news notes: Stem cell therapy, early Aubagio use, DMTs Welcome to āMS News Notes,ā a Monday morning column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Today I’ll focus on stories from the American Academy of Neurology (AAN) 2023 Annual Meeting, held April 22-27 in Boston. Hereās a look at…
April 28, 2023 Columns by John Connor Reflections from the front line: Things are looking up, eventually Ceilings. Oh yeah, Iāve become quite the expert on ceilings. If you spend much of your life prostrate, itās hard not to. The very first column I wrote for Multiple Sclerosis News Today opened with this very topic. As it was an unsolicited spec piece, I was pleasantly…
April 28, 2023 Columns by Ed Tobias If you have MS, is it time to get another COVID-19 booster? Those with multiple sclerosis (MS) may want to roll up their sleeves again for a COVID-19 vaccine. I’m thinking about whether to join them. About 10 days ago, an advisory committee of the U.S. Centers for Disease Control and Prevention (CDC) supported a recommendation that people 65…
April 27, 2023 Columns by Benjamin Hofmeister Our treatments for multiple sclerosis aren’t cures, but vital time-buyers Note: This column describes the authorās own experiences with Ocrevus (ocrelizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Tomorrow morning, I’ll have my 13th infusion of Ocrevus (ocrelizumab). I’ve been approved for the fast infusion rate, so…
April 25, 2023 Columns by Jamie Hughes Hardships and the good life: Why our mental approach to MS matters I don’t really like problems. And I donāt think Iām alone in this. No one I know wakes up hoping a seemingly insurmountable obstacle or painful trial is flung smack in the middle of their path. If it were up to me, Iād rather wake up to perfect hair, hit…
April 24, 2023 Columns by Ed Tobias MS news notes: Yoga, vitamin D, myelin repair, fall risk Welcome to āMS News Notes,ā a Monday morning column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: Yoga vs. physical therapy The MS News Today article “Yoga better than physical therapy at improving…
April 21, 2023 Columns by John Connor Reflections from the front line: Awakening to the new dawn COVID-19 had finally left me. Its only trace was a pair of slimy hands. For a month, I requested a towel in bed to wipe them dry. My wife, Jane, told me my hands were fine; my phoneās screen, however, didnāt agree. As my companion in the hospital…
April 21, 2023 Columns by Ed Tobias Lucky me, with light injuries after falling while riding a scooter Oops! I took a turn too fast in the parking lot of my condo the other morning and tipped to the left. And with that, my mobility scooter and I headed for a fall. Do you know the feeling when something bad is about to happen and there’s nothing…
April 20, 2023 Columns by Benjamin Hofmeister Multiple sclerosis requires a different kind of can-do motivation I’m pretty good at doing what I’m told. You probably think that’s because I was in the Army for 22 years. You might even think it’s because of all the medical authority figures that have come with nine years of multiple sclerosis (MS). Of course, they both factor in,…
April 17, 2023 Columns by Ed Tobias MS news notes: EBV vaccine trial, DMT costs, Mavenclad, evobrutinib Welcome to āMS News Notes,ā a Monday morning column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: EBV vaccine trial could start in 2024 The MS News Today story “Vaccine against Epstein-Barr virus…
April 14, 2023 Columns by Ed Tobias Will layoffs at Biogen affect its focus on multiple sclerosis treatments? Biogen has been a top dog in the multiple sclerosis (MS) treatment field for decades. The pharmaceutical giant developed Avonex (interferon beta-1a), approved in the U.S. in 1996 as one of the first disease-modifying therapies (DMTs) for MS. I remember how excited I was to be…
April 13, 2023 Columns by Benjamin Hofmeister Multiple sclerosis might be the ‘uncanny valley’ of diseases I recall a conversation I had with an acquaintance soon after my diagnosis. I hadnāt progressed to a wheelchair yet, but my limp was noticeable, and he’d heard talk from mutual friends. “What is it that you have?” he asked. “Multiple sclerosis.” A moment of wide-eyed silence…
April 11, 2023 Columns by Jamie Hughes Go ahead, youāve earned it: The benefits of MS self-care Well, dear reader, my time in Florida is coming to an end. Mom is home from the hospital after her surgery and a stint in rehab. She has begun outpatient physical therapy, and slowly but surely, sheās getting back to a new kind of normal. My being here is…
April 10, 2023 Columns by Ed Tobias MS news notes: Sativex, Octopus ‘mega-trial’, Ocrevus, snuff Welcome to āMS News Notes,ā a Monday morning column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: Good patient reviews for Sativex Sativex (nabiximols) is an oral cannabinoid spray designed to ease MS…
April 7, 2023 Columns by John Connor Reflections from the front line: The waiting game It transpired that Iād gone and fallen at the worst possible time, landing myself in the midst of a major news story. Iād been aware that what had toppled me was most probably my persistent urinary tract infections (UTIs). They were different and numerous, and acted like allied combatants…
April 7, 2023 Columns by Ed Tobias What my spring training looks like with MS My exercise routine was first disrupted by the pandemic. Then Hurricane Ian landed a right hook on the exercise room in my Florida community, knocking it out of action. But not long after that, my thoughts were turning to something sweeter ā pitchers and catchers returning to spring…
April 6, 2023 Columns by Benjamin Hofmeister Being seen is an incredible thing when MS makes you feel invisible The kids had their spring break last week, so we loaded up and drove to Universal Studios in Orlando, Florida. I promise this column won’t be a review of the theme park and its accessibility (which was great, by the way). It won’t offer tips about traveling with…
April 3, 2023 Columns by Ed Tobias MS news notes: Orelabrutinib, foralumab, diets, coffee and tea Welcome to āMS News Notes,ā a Monday morning column in which I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: A positive report on orelabrutinib Orelabrutinib is one of several experimental Brutonās tyrosine kinase (BTK)…
March 31, 2023 Columns by John Connor Reflections from the front line: Stand up, gratefully fall down again If you havenāt read last weekās column (ah, another discerning nonreader), all you need to know is that Iām in a pain sandwich very much of my own making. And this was an improvement! Iād rather be turned into a hefty snack by a Molift Raiser and a…
March 31, 2023 Columns by Ed Tobias That UTI ā was it caused by MS or was it the meat? Many people with multiple sclerosis (MS) have experienced urinary tract infections (UTIs) at some point. It’s a common problem with MS and can be caused by a number of things, such as the inability to fully empty the bladder or the need to self-catheterize. Symptoms can include urinary…
March 30, 2023 Columns by Benjamin Hofmeister There’s no point in playing the blame game after the disease is diagnosed In a previous column, I wrote about the journey to my diagnosis of multiple sclerosis (MS). In it, I mentioned that the neurologist had praised me for “taking this well.” I suppose I did ā at first. When I eliminated the other possibilities, I was left with an…
March 27, 2023 Columns by Ed Tobias MS News Notes: Briumvi, COVID-19, PML, disability rights victory Note: This column was updated March 30, 2023, to remove the statement that Briumvi is more potent than Ocrevus or Kesimpta as there have been no trials comparing the three therapies’ potency. Welcome to āMS News Notes,ā a Monday morning column in which I comment on multiple sclerosis (MS)…
March 24, 2023 Columns by John Connor Reflections from the front line: I canāt even fall properly this time! Things had been more than dodgy for the past three days. My right shoulder had gone into complete spasm, and even diazepam couldnāt relax it. Iād also upped my antibiotics as instructed. Nada. As ever, I shouldered on (a naff play on words already, John? Dearie me), stuck on…