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…
August 3, 2023 Columns by Benjamin Hofmeister As my kids head back to school, I must prepare for inevitable illnesses This morning, at an unholy hour, our family awoke to the sound of alarm bells. Well, not bells, but rather the gentle yet insistent sound of one of Alexa’s alarms. Actually, we changed the name of our bedroom device to Ziggy, so we can’t simply roll over, still…
July 31, 2023 Columns by Ed Tobias MS news notes: AI and MS diagnosis, gut bacteria, DMTs 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: Could MS be predicted by an artificial intelligence tool? Wouldn’t it be great if there was a way to predict…
July 28, 2023 Columns by John Connor What started as a simple problem turned into a complex kerfuffle Long ago, I acquired a pair of speakers for my laptop. In fact, theyāve survived many, many iterations of the things. Laptops become outdated quickly, their inbuilt fans fail, or, as in my latest version, the installed RAM is only 8 gigabytes. I’ve been made aware that RAM, or random-access…
July 28, 2023 Columns by Ed Tobias I’m trying Factor meal service in an attempt to eat healthier My wife hates to cook, except for a big Thanksgiving turkey. I don’t know how to cook, except for scrambled eggs or meat on a grill. So for many years, our meals have pretty much been restaurant (eat-in or carry-out), ready-to-heat from the grocery store, frozen (lasagna or pizza), and,…
July 27, 2023 Columns by Benjamin Hofmeister Why it’s strangely comforting that MS doctors don’t know everything I’m not a doctor, just a patient. And depending on whom you ask, I’m not a very good one, either ā unless you happen to be fond of lots of questions. I was a medic in the U.S. Army ā a time buyer, as I refer to it…
July 24, 2023 Columns by Ed Tobias MS news notes: DMT use in older people, spinal MRIs, and more 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: Are DMTs useful and safe for older MS patients? The MS News Today story “Can elderly MS patients…
July 21, 2023 Columns by John Connor Reflections from the front line, take 2: If only all hospitals were like this As last week’s column ended, Iād just negotiated with my ambulance driver and paramedics to take me to any London hospital other than the one where Iād spent the Christmas months. They offered me St Georgeās Hospital, which I knew to be the major trauma center ’round these…
July 21, 2023 Columns by Ed Tobias Why pills became the most popular first DMTs for MS Note: This column describes the authorās own experiences with several disease-modifying therapies for multiple sclerosis. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Times, they’ve been a-changing for disease-modifying therapies (DMTs). When I was diagnosed with multiple…
July 20, 2023 Columns by Benjamin Hofmeister In life with multiple sclerosis, self-care is anything but selfish About three years before my multiple sclerosis (MS) diagnosis and subsequent retirement, I found myself in Iraq preparing for a mission. I was going out with a different team from another branch of the U.S. military, and the planning and briefing process wasn’t as detailed as I was…
July 18, 2023 Columns by Ed Tobias MS news notes: 10-minute Ocrevus injection, NfL blood test, optic nerve Editor’s note: “MS News Notes” will return to its regular Monday morning schedule next week. 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: A 10-minute injection of…
July 14, 2023 Columns by John Connor Reflections from the front line, take 2: Back into the fray There was no column from me last week, and here follows the reason why: “In the wee small hours,” as Frank Sinatra so eloquently crooned, I, too, was abruptly awake. Only I hadnāt drunk my way there. Instead, my wee was indeed a real one, though painfully…
July 14, 2023 Columns by Ed Tobias Bottoms up: Why I’m drinking more water because of my MS I’m drinking again, more than I have in years. It’s not the hard stuff, though; not even beer or wine. It’s just plain water. That may sound crazy for someone like me who has bladder problems due to multiple sclerosis (MS). For many of us with MS, we…
July 13, 2023 Columns by Benjamin Hofmeister Multiple sclerosis has made my once-dominant hand less so I am not left-handed! No, I’m not channeling Westley or Inigo from “The Princess Bride,” just clarifying a common ā and fair ā assumption. While I now do nearly everything left-handed, including eating, drinking, and even typing this column, my right hand was dominant for most of…
July 10, 2023 Columns by Ed Tobias MS news notes: New gadolinium agent, myelin, high-efficacy 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. Hereās a look at whatās been happening: Testing a new MRI contrast agent One concern that some people with MS have when getting an MRI…
July 7, 2023 Columns by Ed Tobias We need more advertisements portraying people with disabilities I nearly jumped for joy ā well, I would’ve if I could’ve ā when I saw a new TV commercial for the Expedia travel company the other day. It shows a woman in winter who’s obviously had enough of the cold, ice, and snow. She is desperate to…
July 5, 2023 Columns by Benjamin Hofmeister With a disabling condition, seeking help is part of independence I must look like I need help all the time. I donāt own a shirt or any other article of clothing that says so, and I donāt think I have a helpless look on my face, either. I smile often, sometimes genuinely and sometimes with my mouth formed in…
July 3, 2023 Columns by Ed Tobias MS news notes: Stem cell therapy, genetic variant, diet 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: Another study shows positive results with stem cell therapy Yet another study has concluded that autologous hematopoietic…
June 30, 2023 Columns by John Connor I get no kick from champagne ā but what a kick I get from steroids Itās only day one, but my eyesight has already improved. It may not be that of a hawk’s, but at least I can tell the difference between a lumbering pigeon and a bird of prey. The world seems brighter ā and not just because of that vision thang, peeps. If…
June 30, 2023 Columns by Ed Tobias My COVID-19 antibodies are still in my blood, but does it matter? It’s been almost two and a half years since my first COVID-19 vaccine ā eight months since my most recent booster ā and my COVID-19 antibodies seem to still be doing their thing. I know this because, after having nine test tubes of blood drawn, the lab results…
June 29, 2023 Columns by Benjamin Hofmeister Living with MS is not just ‘all or nothing,’ but I kind of wish it were A few ā OK, many ā years ago, I played the lead in a production of “Oklahoma!” Donāt get excited; it wasnāt on Broadway or anything like that. It was a high school production, and I suspect I only landed the role because I could sing ā and probably…
June 26, 2023 Columns by Ed Tobias MS news notes: Vaccinations, sex coping strategies, myelin repair 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: MS experts offer more than 50 vaccine guidelines I know there are different opinions about vaccines, and I’ve…
June 23, 2023 Columns by John Connor Thereās more to life than this (expletive) MS, and other stories Nobody’s life is eternal, but letās face it, peeps: Much of the psyche of a multiple sclerosis (MS) patient is internalized. I spend an inordinate amount of time, physical and mental, on my illness. Yer, OK, Iām not turning this into a therapy session. Or am I? A serious…
June 23, 2023 Columns by Ed Tobias A good doctor-patient relationship matters to people with MS “What can Dr. Crayton help you with today?” I was starting my annual multiple sclerosis (MS) checkup with my neurologist, and before I met with her, I got this question from her MS nurse. I was stumped. I’d never been asked that before. I think most people with MS…
June 22, 2023 Columns by Benjamin Hofmeister The right support is essential when you have multiple sclerosis I didn’t seek support immediately after my diagnosis of multiple sclerosis (MS). To be fair, MS was just an annoyance to me at the beginning. It was simply a set of symptoms, and I was initially happy just to have an explanation for them. To be…