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…
March 24, 2023 Columns by Ed Tobias Is preboarding travelers with disabilities a good thing or not? Boarding an aircraft before others is a small benefit to being a disabled flyer. For years, giving me a small start to get down the jetway ahead of even the most frequent of frequent flyers has given me time to get off the little scooterĀ I use due to my…
March 23, 2023 Columns by Benjamin Hofmeister With multiple sclerosis, itās hard to stop saying ‘I’m sorry,’ but you should Even if I resolved to improve my cardiovascular health by taking the stairs more often, I canāt. Mobility problems brought on by my primary progressive multiple sclerosisĀ force me to use a wheelchair. Using a wheelchair, in turn, means that stairs and I are natural enemies (as are curbs and…
March 21, 2023 Columns by Jamie Hughes There’s so much to gain: Finding the upside to being ‘broken’ with MS I have a friend who’s truly blessed. Aside from the typical struggles that come with being an adult, he has few problems. Seriously. Neither he nor a loved one has had any major medical issues. No one in his immediate family has passed away yet, and while heās not rolling…
March 20, 2023 Columns by Ed Tobias MS news notes: Ocrevus, MDX-2201, online cannabis clinic, WHO 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: Study shows Ocrevus lowers risk of MS progression This seems to be just what the doctor ordered,…
March 17, 2023 Columns by John Connor Reflections from the front line: Dying, an atheist (a)muses If you noticed my sudden disappearance, it wasn’t because I was sacked. Surprising, I know. Just “MS MIA” ā missing in action with multiple sclerosis. While raving in the hospital, I was suddenly moved to my own private room. In Britainās National Health Service (NHS), this could only mean…
March 17, 2023 Columns by Ed Tobias 3 tools to help you choose the right MS disease-modifying therapy Choosing the best disease-modifying therapy (DMT) to treat your multiple sclerosis (MS) can be a tough decision.Ā When I was diagnosed with MS way back in 1980, it was easy. There were no DMTs to choose from. The first three ā Avonex (interferon beta-1a), Betaseron…
March 16, 2023 Columns by Benjamin Hofmeister When multiple sclerosis invades even my dreams I may not be able to turn in circles like a dog anymore, but I still have a few bedtime routines. Before I had an intrathecal baclofen pump, multiple sclerosis-induced spasticity would wake me up multiple times during the night. Whenever that happened, it was next to…
March 13, 2023 Columns by Ed Tobias MS news notes: MSC-NP, GA Depot, AI and MRIs, aggressive treatment 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 different type of stem cell transplant When stem cell transplant is mentioned to treat someone…
March 10, 2023 Columns by Ed Tobias A debt of gratitude to disability rights champion Judy Heumann You may not have heard of Judy Heumann, who died March 4 at the age of 75. Although she’s not directly connected to the multiple sclerosis (MS) community, you should know about her. Everyone who lives with a disability owes her a great deal. At just 18 months old,…
March 9, 2023 Columns by Benjamin Hofmeister An MS diagnosis can be confusing when it doesn’t fit your lifestyle A little over three years passed between my multiple sclerosis (MS) diagnosis and my medical retirement from the U.S. Army. Even before the diagnosis, I knew something was wrong and had taken a desk job while searching for the reason. Since I was behind a desk in a…
March 8, 2023 Columns by Beth Ullah Living with MS involves ‘invisible’ symptoms that are hard to explain The “invisible” symptoms that are common with relapsing-remitting MS and many other chronic illnesses can be the bane of our lives. It’s difficult enough to manage them, as they’re constantly fluctuating like a changing tide. But in some ways, it’s even more difficult to explain them to…
March 7, 2023 Columns by Jamie Hughes Kindness matters because you never know what others are going through Iāve always liked the quote, āEveryone you meet is fighting a battle you know nothing about. Be kind. Always.ā Some folks think it was penned by the Scottish author Ian Maclaren (sometimes MacLaren). Others attribute the quote to actor Robin Williams (which is fitting, I think, given the…
March 6, 2023 Columns by Ed Tobias MS News Notes: Briumvi, vitamin D, CNM-Au8 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. In this column, Iāll be highlighting more MS News Today articles from the Americas Committee for Treatment and Research in Multiple Sclerosis…
March 3, 2023 Columns by Jennifer (Jenn) Powell ACTRIMS 2023: Learning, lectures, and leaving with hope Even the cold and rainy Southern California weather did little to dampen the excitement of the more than 1,800 attendees converging on the Marriott Marquis San Diego Marina. People filtered in, eager for the meeting to begin. Excitement reached a fever pitch Thursday morning as the curriculum came to life.
March 3, 2023 Columns by Ed Tobias Let’s talk about MS fatigue and the effectiveness of treatment options Want to reduce your multiple sclerosis (MS) fatigue? Maybe we should talk about it. I’m talking about a fatigue treatment called cognitive behavioral therapy (CBT), which usually involves changing a person’s thinking and behavior. By talking with a therapist, sometimes on the phone, a patient develops an…
March 2, 2023 Columns by Benjamin Hofmeister The responsibility for raising MS awareness goes both ways Every once in a while, I wake up prepared to swing my legs over the side of the bed and get moving. That sleep-induced forgetfulness evaporates as soon as the reality of multiple sclerosis (MS) reminds me that I canāt swing anything. I suppose I should be grateful that…
February 27, 2023 Columns by Ed Tobias MS news notes: Evobrutinib, a portable MRI, fatigue, depression 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. In this column, I’ll be highlighting some MS News Today stories from last week’s Americas Committee for Treatment and Research in Multiple Sclerosis…
February 24, 2023 Columns by Ed Tobias Lower-dose gadolinium now being used for MRIs with contrast If you have multiple sclerosis (MS), I’m sure you’ve had several MRIs by now. You’ve probably also had one using a contrast agent. The contrast agent is made from a rare earth element called gadolinium. Mixed with other chemical ions, it highlights lesions or areas…
February 23, 2023 Columns by Benjamin Hofmeister Learning to love ā and accept ā that person in the photograph We had family portraits made a few days ago. With a family of five, this never goes perfectly, so there was a little pre-photo briefing beforehand. There were some veiled threats, a promise of dinner after as a reward for good behavior, and more than a few hissed admonishments to…
February 21, 2023 Columns by Jamie Hughes Thankful for caregivers: What MS has taught me about support Itās been a couple weeks since my last column, and things with my mother have proven more challenging than we expected. Sheās had another minor procedure to stop fluid from building up in her chest, but she is progressing with her rehab and continues to gain strength. Hopefully, weāll…