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…
September 8, 2023 Columns by John Connor Youāve got a Napoleon complex, you have, mate I don’t have a Napoleon complex in the sense of being small. My body still spans 6 feet, though that’s only when I’m lying down; I doubt I get anywhere near 5 feet tall while seated in my wheelchair. Saint Jane (my wife) is 5-foot-2, and I now look…
September 8, 2023 Columns by Jamie Hughes Live well, love well, be well: Bidding my dear readers farewell When I started this column nearly seven years ago,Ā I thought I had a couple years of material in me at best. It’d be a fun experience writing twice a month, getting some thoughts out there into the world and hopefully helping some people in the process. It certainly has…
September 8, 2023 Columns by Ed Tobias Let’s not get overexcited about any mouse study used in research Mice exaggerate and monkeys lie, some researchers jokingly say. (Or is it the other way around?) Testing on rodents and animals is a typical early step in creating medications, and Multiple Sclerosis News Today publishes news articles about many of these studies. It’s interesting to read what researchers are…
September 7, 2023 Columns by Benjamin Hofmeister How do you define defiance while living with MS? Recently, I was asked about the design on the left side of my “Chairborne” banner. A friend from my previous occupation humorously noted that in the original graphic, there’s a skull in the center where the wheelchair now resides. I pointed out that in my current state, a wheelchair…
September 5, 2023 Columns by Ed Tobias MS news notes: Diagnosing PPMS, NB-4746, Neubie stimulation 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: PPMS is difficult to diagnose, report says Most people who have multiple sclerosis start out with a diagnosis of…
September 1, 2023 Columns by John Connor Yet another urinary tract infection causes a complete change of plans What follows is something of an emergency column. All of yesterday’s writing had to be scrapped. Iām now down at the bottom of Column Mountain, squinting up through the clouds and mist, trying to work out again whatās the best route to climb. Last night, I knew the dreaded urinary…
September 1, 2023 Columns by Ed Tobias The 1st biosimilar OK’d as an MS DMT should save patients money The late August approval of Tyruko (natalizumab-sztn) by the U.S. Food and Drug Administration (FDA) is big news in the multiple sclerosis (MS) world. Tyruko is a biosimilar for Tysabri (natalizumab), and it’s the first biosimilar to gain FDA approval as an MS disease-modifying therapy…
August 31, 2023 Columns by Benjamin Hofmeister With multiple sclerosis, hindsight is accurate āĀ and often unkind “Being diagnosed later in life is like watching a TV show with a huge plot twist revealed at the end of the season and then rewatching it with this new knowledge, picking up on all the foreshadowing and getting upset that you didn’t see all of it before.” ā…
August 28, 2023 Columns by Ed Tobias MS news notes: Spasticity, early treatment, pediatric onset 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: Can noninvasive brain stimulation reduce MS spasticity? For a long time, I’ve had to deal with spasticity, a common…
August 25, 2023 Columns by John Connor The itch that turned into an outbreak of yet another comorbidity It’s a new week, so itās time for a new comorbidity. Not content with affecting my brain, spine, and bodily functions, secondary progressive multiple sclerosis is now making my body break down at a cellular level. Make something funny out of that, Connor. Toughie, this one. Maybe later ā…
August 25, 2023 Columns by Ed Tobias My scooter, my grandkids, and a cave: What could go wrong? My wife, Laura, thought it would be fun to take our grandkids, ages 7 and 9, to spend a few hours exploring a giant cave. I wasn’t so sure. Ten minutes into the excursion, I was wondering which one of the adults would be hauled out in an ambulance. This…
August 24, 2023 Columns by Benjamin Hofmeister Living with MS can often feel like being lost in the woods Years before joining the Army crossed my mind, I was a Boy Scout. We learned all sorts of skills, earned merit badges, and, of course, spent lots of time hiking and camping. I have many fond memories of those scouting years, but one lesson I remember in particular was…
August 21, 2023 Columns by Ed Tobias MS news notes: Measuring the cost of MS, early treatment, Pilates 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: MS is costly to patients and society People with MS understand how costly the disease can be in terms of…
August 18, 2023 Columns by John Connor Oh, how far we’ve come since the ‘Victorian Era’ of treating MS In 2010, I strolled into a new hospital to meet my new neurologist. In them there far-off days, I was indeed strolling ā nay, striding ā but it wouldn’t last. I was surrounded by an aura of self-confidence that anyone whoās survived the vicissitudes of nearly three decades of show…
August 18, 2023 Columns by Ed Tobias A topical reminder to prepare for a disaster while living with MS By now, I’m sure you’ve seen the pictures of the wildfires that charred Maui, Hawaii. As I write this, a week after the blaze, The Associated Press reports that more than 100 people have been killed, and the governor expects “scores more.” Some neighborhoods are gone. People literally…
August 17, 2023 Columns by Benjamin Hofmeister Parachuting my way through this life with MS Ten minutes away from the drop zone, we stood up and began the final preparations for the jump. The aircraft flew in anything but a straight line as it turned, banked, and swiftly changed altitude. This unpredictable flying technique was tactically sound, as it made the plane difficult to target,…
August 14, 2023 Columns by Ed Tobias MS news notes: Biomarkers, cow’s milk, EBV vaccine 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: Is it MS or something else? Should all autoimmune diseases that damage myelin be called MS? Probably not, according…
August 11, 2023 Columns by John Connor What I should’ve been told about clinically isolated syndrome and MS In 2007, at age 47, I had my first-ever consultation with a neurologist. It was during my longest-ever hospital stay, as of then ā a whopping eight days. It amazed me that some of my fellow patients in the ward managed to gather themselves and struggle outside for a ciggy,…
August 11, 2023 Columns by Ed Tobias Who says MS doesn’t hurt? Multiple sclerosis (MS) is a pain in my butt ā and other places, too. It hasn’t always been that way. For many years post-diagnosis, I didn’t notice much pain. But of the 43 years I’ve lived with MS, it’s hurt for the past 15. Usually, it’s just…
August 10, 2023 Columns by Benjamin Hofmeister Multiple sclerosis makes it tough to deal with the heat of the dog days I like to look up. No, I’m not referring to my disposition, although I do consider it to be an improvement over what it once was. I’m actually pretty sunny, if you happen to think of “sunny” as burning, harsh, and damaging when you’re exposed to it. What I…
August 7, 2023 Columns by Ed Tobias MS news notes: DMT survey, keto diet, Gilenya generic 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: Neurologists comment on DMTs available for RRMS There are 20 disease-modifying therapies (DMTs) available to treat MS in the…
August 4, 2023 Columns by John Connor MS comorbidities make me a stranger in a strange body I was never a hypochondriac until multiple sclerosis (MS) whacked me. A catastrophic fall while playing tennis in 2007 resulted in a shoulder separation that took two operations to fix. The pain was so bad that, at the time, MS was just something else I had. To be accurate,…
August 4, 2023 Columns by Ed Tobias In August, I’m celebrating a big birthday and an MS anniversary “Will you still need me, will you still feed me/ when I’m 64?” Could Paul McCartney have imagined what life would be like at 64 when he wrote that iconic lyric as a teenager, or when the Beatles recorded it in their early 20s? I never could’ve imagined…