January 14, 2022 Columns by Ed Tobias Aquatic Therapy for Chronic Back Pain 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…
January 10, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Lemtrada, Music and White Matter, Diagnosing MS AB Science OKād 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…
January 7, 2022 Columns by Jamie Hughes Itās No Puzzle: Play Is Good for Your Brain I donāt 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, itās weird. When I returned home…
January 7, 2022 Columns by John Connor As Omicron Spreads, I’m Keeping My Head Down 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…
January 7, 2022 Columns by Ed Tobias More Answers About COVID-19 Vaccines and MS 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…
January 3, 2022 Columns by Ed Tobias MS News That Caught My Eye Last Week: Cortrophin Gel, Simvastatin, COVID-19 Treatments 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…
December 20, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: COVID-19 Vaccines, Achtar Gel, Ublituximab, Pregnancy 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…
December 17, 2021 Columns by Jamie Hughes Feeling Overwhelmed? Wander Under the Stars 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…
December 17, 2021 Columns by John Connor Santa Is Not Cominā 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…
December 17, 2021 Columns by Ed Tobias Sun-seeking Finds Support in New Study 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,…
December 15, 2021 Columns by Beth Ullah Learning to Embrace My ‘Hot Wheels’ 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…
December 13, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: DMTs and Age, Lyvispah, Cells Driving MS, Melatonin 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…
December 10, 2021 Columns by John Connor An Interview With My Primary Carer Iāve been meaning to do this for a while. My wife, Jane, whoās 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 Iād strike ā if she came back! Fortunately, she did,…
December 10, 2021 Columns by Ed Tobias I’m Back on the MS ‘Bladder Coaster’ 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…
December 6, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Vitamin D Deficiency, Emotions, Neurostimulation 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,…
December 3, 2021 Columns by Jamie Hughes Do What You Can Do (And No More) I donāt know about you, but last week passed in a blur. I typically enjoy Thanksgiving, but this year, things were a little wonky. My husbandās grandfather passed away a month or so ago, so we werenāt about to ask his grandmother to prepare anything. My mother-in-law and I decided…
December 3, 2021 Columns by John Connor Thereās a New Primary Carer in Town 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…
December 3, 2021 Columns by Ed Tobias My Lemtrada Treatment, 5 Years Later 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)Ā infusions was about to begin. I’d prepped for this day: two days…
December 1, 2021 Columns by Beth Ullah I’m Climbing the Hills of Adversity, Just Not in Heels āShoes are the quickest way for women to achieve instant metamorphosis.ā ā 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…
November 29, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Stem Cell Trial, COVID-19 Vaccines, MS Blood Test First Patient Dosed in Phase 1 Trial of IMS001 Therapy IMS001 is an investigational treatment that uses mesenchymal stem cells (MSC) ā 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…
November 24, 2021 Columns by Beth Ullah MS and Fertility: Conflicts of the Heart and Mind āRock bottom is the end of what wasnāt true enough. Begin again and build something Truer.” ā 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…
November 22, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Neural Sleeve, Supplements, Ocrevus, Cladribine Injection Wearable āNeural Sleeveā 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…
November 19, 2021 Columns by Jamie Hughes ‘Once More, With Feeling’: How Singing Can Benefit MS Patients A few weekends ago, I had what Iāve described as a mini midlife crisis. Things with the kids were a mess, my husband was out of town again (to help with a building project on the family farm), and surrounded by the mess and bother of everyday life, I couldnāt…
November 19, 2021 Columns by John Connor My Coffee Cup Runneth Over, Plus a Darned Interruption So, where was I last week? I was in the midst of writing this column when I was felled overnight by my long-term nemesis: a urinary tract infection (UTI). As usual, I had no idea I had one ā but hey, I was ill. Iām sure Iāve banged on…
November 19, 2021 Columns by Ed Tobias Can Focusing on the Epstein-Barr Virus Help Researchers Fight MS? There are continuing signals that the Epstein-Barr virus (EBV) is a fuel that can spark a multiple sclerosis (MS) fire. EBV is a herpes virus that causes infectious mononucleosis, more commonly known as mono. Sometimes called the “kissing disease” because the virus that causes it is easily spread through saliva,…
November 15, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: NVG-291, Ocrevus, Tolebrutinib, Tecfidera Nerve Repair Therapy NVG-291 Safe, Well-tolerated in Healthy People This experimental therapy has a long way to go before it becomes reality. But it’s encouraging that this first step found NVG-291’s side effects to be mild and short-lasting. NVG-291 is designed to promote remyelination by modulating an enzyme called…
November 12, 2021 Columns by Ed Tobias I’m Sleeping Better These Days, but Why? I had a great night’s sleep the other night. I fell asleep quickly and slept straight through the night for nearly seven hours. When I got up in the morning, I felt refreshed, which is exceedingly rare these days. Plus, it even happened a few more times in the past…
November 10, 2021 Columns by Beth Ullah MS Advocacy Gives Me Strength and Purpose I want to help in any way I possibly can. My lonely confusion in the early days after being diagnosed with aggressive relapsing-remitting multiple sclerosis was mentally and physically paralyzing. However, this column isnāt about how āHurricane MSā battered my body. Instead, it’s about why I chose to…
November 8, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: Acthar Gel, Alcohol and MS Risk, Mindfulness Analysis Finds Acthar Gel Cost-effective for MS Relapses I’ve seen social media posts from people with MS who use Acthar Gel and report that it helps with their spasticity. The gel, which is a shot, not an ointment, prompts the body to creates cortisol, a steroid hormone that helps…
November 5, 2021 Columns by John Connor On the Healing Powers of THC I have to admit, Iāve wheeled down the THC path a few times before. Yes, I know itās very difficult to stay on the path when under the influence. Luckily, I’ve solved this problem by only imbibing in bed. I say imbibing, because for me, smoking the stuff is…