October 30, 2023 Columns by Ed Tobias MS news notes: Dalfampridine, Neural Sleeve, vitamin D Welcome to āMS News Notes,ā a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: Dalfampridine side effects The side effects that might occur if you use dalfampridine (sold under the brand name Ampyra)…
October 27, 2023 Columns by Ed Tobias Drawn back to the Sunshine State, where my MS symptoms feel better I’m back in my happy place. My wife, Laura, and I, along with our Yorkie-poo and our Maine Coon cat, have made it back to our Florida home after 16 hours and about 1,000 miles of driving over two days. There were no traffic jams, we had a comfortable motel…
October 26, 2023 Columns by Benjamin Hofmeister Pretending to be well so we don’t look like we’re faking being sick Halloween is five days away, and if you have kids, you’re running out of time to have your costumes ready. My wife and our three boys have everything figured out, minus some finishing touches ā unless I want to dress up, of course. Fortunately, I wasn’t planning on it because…
October 25, 2023 Columns by Mike Parker Dragged into my MS diagnosis, but now jumping for a cure: Part 3 Multiple Sclerosis News Today is chronicling MS advocate and podcaster Mike Parkerās journey, leading up to a skydiving jump heāll make Oct. 29 to benefit the MS Society U.K. Learn more about Mike at mikesmsjourney.com. You can also donate to his fundraiser.Ā Third in a…
October 23, 2023 Columns by Ed Tobias MS news notes: EBV, stopping a DMT, 3 treatment reports Welcome to āMS News Notes,ā a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. This week, the stories cover research presented at the joint meeting of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) and the…
October 20, 2023 Columns by John Connor This is what happens when I actually take the weekend off A few columns back, I wrote about my lack of time to get anything done. Sure, the way around it would be to get up infernally early ā well, early for me. But Iām most certainly not going to pay to be punished. And thatās the story Iāve always…
October 20, 2023 Columns by Ed Tobias Musicians living with MS find inspiration in their conditions “Iām so tiredThe hammerās coming down againIām hardwiredAll the signals cross and double backBroken insideThereās no fixing anythingHow do i explainIām fighting every day to do the simple things?” The lyrics to “Hammer,” written by singer Susie Ulrey and the band Pohgoh,…
October 19, 2023 Columns by Benjamin Hofmeister With a diagnosis of MS, you learn to expect the unexpected I try not to let my life revolve around multiple sclerosis (MS), but there’s no escaping the fact that the disease affects every part of it. That’s a bit of a conundrum and often frustrates me to no end. If there’s a bright side to be found, it’s that…
October 18, 2023 Columns by Mike Parker Dragged into my MS diagnosis, but now jumping for a cure: Part 2 Multiple Sclerosis News Today is chronicling MS advocate and podcaster Mike Parkerās journey leading up to a skydiving jump heāll be making Oct. 29 to benefit the MS Society U.K. Learn more about Mike at mikesmsjourney.com. You can also donate to his fundraiser.Ā Second in…
October 16, 2023 Columns by Ed Tobias MS news notes: Ocrevus injection, Tysabri scheduling, OCH for SPMS Welcome to āMS News Notes,ā a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. This week, the stories cover research presented at the joint meeting of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) and the…
October 13, 2023 Columns by John Connor No more ‘Independence Day’ for this tentative road worrier About a month ago, I embarked on what might have been my last-ever solo outing. You can file it away with my other lasts: sitting down and getting off the sofa on my own, walking without mobility aids, doing a controlled Frankenstein’s monster stumble into my bedroom, putting myself to…
October 13, 2023 Columns by Ed Tobias A breakdown has me scouting out new scooters for my MS My mobility scooter died last week. I can walk 100 feet or so using a pair of canes, but my wheels are usually my legs. So when I turned the key and discovered those “legs” were powerless, I was in a bind. This breakdown couldn’t have happened at a worse…
October 12, 2023 Columns by Benjamin Hofmeister How the 5 types of impostor syndrome can affect those with MS With my kids in school, me being retired, and, of course, the limitations of my multiple sclerosis (MS), I have a lot of free time on my hands. I’d like to say that I always use it productively, but thatās far from the truth. I putter ā if you…
October 11, 2023 Columns by Mike Parker Dragged into my MS diagnosis, but now jumping for a cure: Part 1 Multiple Sclerosis News Today is chronicling MS advocate and podcaster Mike Parker’s journey leading up to a skydiving jump he’ll be making on Oct. 29 to benefit the MS Society U.K. Learn more about Mike at his website mikesmsjourney.com and click here to donate to his fundraiser.
October 9, 2023 Columns by Ed Tobias MS news notes: Silent progression, ignoring treatments Welcome to āMS News Notes,ā a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: ‘Silent’ MS progression Readers of the MS News Today website and Facebook page sometimes wonder why their MS…
October 6, 2023 Columns by John Connor A rather quiet week is interrupted by rectal mucus discharge The original title for this week’s column wasn’t so much of a headline, but more of an essay. I had to shorten it. Iād also better write a bit more here so that my opening paragraph is a tad longer. Ah, being all meta about it has saved my vegan…
October 6, 2023 Columns by Ed Tobias People with disabilities should be part of equity in healthcare You’d think that people with multiple sclerosis (MS) and other disabilities would have easy access to healthcare services. That’s not always so. A small study in the journal Health Affairs that I wrote aboutĀ last year said many physicians āexpressed explicit bias toward people with disabilities and described…
October 5, 2023 Columns by Benjamin Hofmeister How do you describe your multiple sclerosis to others? Back in spring, I wrote about the fatigue that accompanies multiple sclerosis (MS) and how difficult it was to describe and for others to understand. That’s true, of course, but really, the entirety of MS is difficult to explain. Factor in the variety of symptoms and the…
October 2, 2023 Columns by Ed Tobias MS news notes: Stem cell transplant, Lemtrada, treating seniors Welcome to āMS News Notes,ā a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: Stem cell transplant found to be safe, effective in recent study Autologous hematopoietic stem cell transplant (aHSCT) has been…
September 29, 2023 Columns by John Connor And a good time was had by the sclerosis boys I havenāt seen my mate Nige for years. Actually, to his face I call him Nigel, but itās Nige when I, or anyone else, talk about him in the third person. It’s weird ā I’d never thought about that before typing his name just now. And itās not like he…
September 29, 2023 Columns by Ed Tobias What you need to know about COVID-19, flu, and RSV vaccines My wife and I got the latest COVID-19 vaccine the other day, the first of three vaccines we’ll be getting this fall. The others are the seasonal flu vaccine and the respiratory syncytial virus (RSV) vaccine. This was my sixth COVID-19 vaccine, and I’ve received a…
September 28, 2023 Columns by Benjamin Hofmeister With multiple sclerosis, don’t worry about asking stupid questions I ask a lot of questions. I have to, because I’ve come to realize that I don’t actually know that much. Asking questions (even to myself) is the only solution. Oddly enough, though, learning new things doesn’t completely scratch my itch, as the answers just keep showing me how much…
September 25, 2023 Columns by Ed Tobias MS news notes: ANK-700, traveling for treatment, cognition Welcome to āMS News Notes,ā a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: An ‘inverse vaccine’ trial to treat MS What’s an “inverse vaccine,” you might ask? While traditional vaccines rev up…
September 22, 2023 Columns by John Connor A quiet MS week that’s just too darned loud to think Big breath, for my travails below necessitate a catch-up on my story so far. For once, my multiple sclerosis and the myriad joyous comorbidities itās conferred on me āĀ trigeminal neuralgia, lymphedema, diplopia, spasticity ā have given me a break. So have the fellow travelers who’ve…
September 22, 2023 Columns by Ed Tobias Have you struggled to find a neurologist who understands MS? A question that’s been bothering me lately is this: It seems that more than a few neurologists have a less than optimal understanding of multiple sclerosis (MS). Why is that?Ā In my four decades of living with MS, and during the several years I’ve written this column…
September 21, 2023 Columns by Benjamin Hofmeister Learning the hard way that with MS, no infection is routine I’ve never been one to worry too much about what my purpose in life is. It’s not that I’m incapable of being philosophical, or that I was ever too egotistical to think I needed one. I suppose I just thought that if I had a purpose, it’d work…
September 18, 2023 Columns by Ed Tobias MS news notes: Vaccines, migraines, eye-tracking technology Welcome to āMS News Notes,ā a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look at whatās been happening: Vaccines pose no unusual risk of MS hospitalization, study says It’s time for me to get my seasonal flu shot,…
September 15, 2023 Columns by John Connor Aggressive MS has me depressed for one whole day How do you start a column about depression that isnāt, well, depressing? Thatās a question for me to answer rather than you lot. If youāre still reading this weekās musings, then so far Iāve done pretty darned good. It was a confluence of events that fortunately involved water. I’d…
September 15, 2023 Columns by Ed Tobias I may be stressed out, but my MS doesn’t know about it Lightning struck at 3 a.m. the other night. The alarm system in my apartment blared ā beep, beep, beep ā for hours. The dog was barking, the cat was zooming, and I wasn’t sleeping. My stress meter was off the scale. We know that stress can trigger of…
September 11, 2023 Columns by Ed Tobias MS news notes: Bowel symptoms, MS blood test, diet study Note: This column was updated Sept. 12, 2023, to correct that Octave’s MSDA blood test is currently available and in use throughout the U.S. Welcome to āMS News Notes,ā a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Hereās a look…