“Hey, man, I’m alive. I’m taking each day and night at a time/ I’m feeling like a Monday but someday I’ll be Saturday night.” — Bon Jovi Multiple sclerosis (MS) medications can generally be separated into two categories: disease-modifying therapies (DMTs) and those that help to manage symptoms. While…
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Imaging Brain Metabolites May Help Diagnose, Monitor MS Have you ever heard of magnetic resonance spectroscopic imaging, or MRSI? I hadn’t until I read this story. It’s a technique that in concept allows a radiologist to see metabolites in the brain. Metabolites are small molecules that are produced during…
Art for Our Sake
One of the great things about living in Atlanta is that there is always something new and exciting going on in town. Sure, we have our fair share of sporting events, but on any given night, you can attend a live concert, or see a show or stand-up performance. There…
The World According to MS Ennui
Move along, move along. Nothing to read here. What a great start to a column! Last week, my worries about MS lifted as I was consumed by a glitch in my computer software. I’m pleased to report that I’ve found a whole series of admittedly fiddly workarounds. I’m even…
You may have heard about the research that’s just been published about the Epstein-Barr virus (EBV) and multiple sclerosis (MS). The Harvard T.H. Chan School of Public Health study reports that being infected by EBV raises the risk of developing MS by 32 times. This isn’t a small or…
“Who in the world am I? Ah, that is the great puzzle.” — “Alice’s Adventures in Wonderland,” by Lewis Carrol Jan. 9 was my 31st birthday. I remember looking outside, watching the low January sun glisten on the frosty ground as its orange haze thawed the earth. I liken this…
MS News That Caught My Eye Last Week: Epstein-Barr Virus, EHP-101, Anti-CD20 Therapies, Gut Bacteria
Epstein-Barr Virus May be Leading Cause of MS, Raising Risk by 32 Times Several studies over the past few years have suggested a link between the Epstein-Barr virus (EBV) and multiple sclerosis (MS), but this one is huge, both in the number of participants and in the length…
This Week, MS Takes a Back Seat
The vagaries of multiple sclerosis are always present, but this week, my waking hours have been consumed by something far more important. I say waking hours, but we have to discount much of that time, because I’m put to bed at the early hour of 10 p.m. and spend several…
Multiple sclerosis (MS) has gotten to be a real pain in the back. In the past couple years, I’ve developed pain in a few areas of my body, especially my butt and back. Last winter, I tried physical therapy, but relief lasted only a short while. So, I think I’ll…
AB Science OK’d to Start Masitinib Phase 3 Trial for Progressive MS Many of us with multiple sclerosis (MS) have been waiting for another treatment for progressive forms of MS. I hope this brings us another step closer to one. Masitinib is an oral medication that works by blocking…
I don’t know why, but for some reason, two people in my family decided to get me puzzles for Christmas this year. Granted, one is a rad picture of 30 or so classic book covers, and the other is covered in cats. But still, it’s weird. When I returned home…
I’m pretty sure that wherever you are, you’re responding the same as we all are to the ravages of the latest Bond villain, that dastardly omicron variant of the coronavirus! OK, pipe down, Kiwis. The whole world knows the extreme lengths you’ve gone to avoid a massive COVID-19 outbreak. If…
A little over a year ago, I wrote about whether people with multiple sclerosis (MS) should get a COVID-19 vaccine. I was anxious to be vaccinated as soon as I could, but I was also concerned about how the vaccines would affect someone with MS. Would the side effects…
Cortrophin Gel Now Available in US at AllianceRx Walgreens Prime Cortrophin Gel is similar to Achtar Gel, which was, until the U.S. Food and Drug Administration’s recent re-approval of Cortrophin, the only repository corticotropin injection available in the U.S. Cortrophin Gel is a naturally produced cortisol that is expected…
Study: Anti-CD20 Therapies, Gilenya Lower Efficacy of COVID-19 Vaccines This research adds more evidence to studies that have already shown that certain disease-modifying therapies reduce the effectiveness of COVID-19 vaccines. Those DMTs include Kesimpta (ofatumumab) and Ocrevus (ocrelizumab), plus rituximab, another anti-CD20 vaccine, that is sometimes used…
If you read my last column, you know that my Thanksgiving was eventful, to say the least. Well, it looks like Christmas is shaping up to be another banger. My father-in-law is back in the hospital, still trying to kick the infections that have knocked him flat recently. We…
Santa Is Not Comin’ to Town!
This is the fifth year I’m writing a Christmastime missive about how my MS journey as Santa is going since the disease mortally attacked my immune system. The trouble was that it took doctors ages to work out my diagnosis. Being Santa Claus, no MRI machine…
I’m back in Florida for the next several months, having left cloudy, windy, chilly Maryland for the Gulf Coast. It’s been sunny and in the low 80s for the past few days, and my multiple sclerosis (MS) is feeling just fine. A lot of people with MS avoid the heat,…
As I glance over at the lonesome wheelchair skulking in the shadows of my living room, I recall its arrival like it was yesterday, though it’s been more than four years. My husband, and then carer, had paraded it through the house as if it were a savior, there to…
Worsening of Disability Evident in Older Patients Who Stop DMTs Some neurologists believe that multiple sclerosis (MS) progression slows, or even stops, when people reach their 60s, so they advise patients that there’s no need to continue their disease-modifying therapies (DMTs). Personally, I think a DMT age ceiling is…
I’ve been meaning to do this for a while. My wife, Jane, who’s also my primary MS carer, went away for a few days last week, and with absence making the heart grow fonder and all that, I thought I’d strike — if she came back! Fortunately, she did,…
I thought I finally had this bladder thing licked. After years of urinary urgency and frequency, I’d been doing much better. I was sleeping at least seven hours a night without having to go to the bathroom, and bathroom trips were less frequent in the daytime, too. When traveling…
Vitamin D Deficiency Linked to Early Cognitive Issues in Study I’ve taken a vitamin D supplement for many years because numerous studies have shown a correlation between low vitamin D levels and MS. My levels have been normal for years, and I assume the supplement has helped. Even so,…
Do What You Can Do (And No More)
I don’t know about you, but last week passed in a blur. I typically enjoy Thanksgiving, but this year, things were a little wonky. My husband’s grandfather passed away a month or so ago, so we weren’t about to ask his grandmother to prepare anything. My mother-in-law and I decided…
Well, there’s a new carer at home, actually, but town sounds so much cooler. Like an old-time Western sheriff! My dear wife, Jane, has taken a few days off to attend an ayurvedic yoga retreat, so I’m without the care of She Who Really Must Be Obeyed. (I’ve…
It was five years ago, Dec. 5, 2016, that I scootered into the office of Dr. Heidi Crayton, my neurologist, and plopped into a soft, brown leather recliner. Day 1 of Round 1 of my Lemtrada (alemtuzumab) infusions was about to begin. I’d prepped for this day: two days…
“Shoes are the quickest way for women to achieve instant metamorphosis.” — Manolo Blahnik As the holidays approach, I’m reminded to be thankful for what I have. I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) at 26 years old, and when I became paralyzed, I thought I’d never…
First Patient Dosed in Phase 1 Trial of IMS001 Therapy IMS001 is an investigational treatment that uses mesenchymal stem cells (MSC) — cells derived from human embryos. Preclinical studies have shown that IMS001 has the ability to stabilize an overactive immune system, as is the case in people with…
“Rock bottom is the end of what wasn’t true enough. Begin again and build something Truer.” — Glennon Doyle The first of our four pregnancy losses were our twin daughters in 2013, which happened nearly halfway through my pregnancy. Three years later, the first symptoms appeared that would eventually would…
MS News That Caught My Eye Last Week: Neural Sleeve, Supplements, Ocrevus, Cladribine Injection
Wearable ‘Neural Sleeve’ Counters Foot Drop, Aids Mobility in Study This is a neat concept, described by the manufacturer as a lightweight sleeve on the lower leg that predicts the movement a leg is about to make. Then it sends a signal to the muscles to help lift that…
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