February 12, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: 3rd Round of Lemtrada, Ampyra’s Possibilities, Long-term MD1003, Possible PML Treatment #ACTRIMS2018 ā Third Course of Lemtrada Improves Relapse, Disability in MS Patients, CARE-MS II Trial Shows The normal treatment regimen with Lemtrada is a series of two treatment courses, with the second infusion course given 12 months after the first. A “selling point” for this disease-modifying therapy (DMT) is…
February 9, 2018 Columns by John Connor Do Supplements Add Up? It started with vitamin D. Little did I know I was starting a habit. I had my first sclerosis attack in 2006 and learned about it by having an appalling fall on a tennis court. That’s another story.Ā I haven’t written about that yet, but I’m sure I will.
February 9, 2018 Columns by Ed Tobias Good News for Tysabri Users Who Are JCV Positive One of the many disease-modifying therapies (DMTs) that I’ve been on over the many years of my treatment for MS is Tysabri (natalizumab). It worked well, holding the progression of my MS at bay for the several years that I received the infusions. I’d probably still be on it…
February 8, 2018 Columns by Tamara Sellman The MS Alphabet: Plaquenil, PML, Prevalence, and Other ‘P’ Words (Part 6 of 7) Editorās note: Tamara Sellman continues her occasional series on the “MS alphabet” with this column referencing terms starting with the letter “P.” This post comes sixth in a series of seven. Symptoms of MS Progressive multifocal leukoencephalopathy (PML) Though progressive multifocal leukoencephalopathy (PML) isnāt an actual symptom of MS,…
February 8, 2018 Columns by Jennifer (Jenn) Powell Mercury Rising: Heat and MS My favorite season is fall, which is almost tied with winter, then spring, and finally, summer. I love fall for being the beginning of the holiday season as well as for the change in temperature. Although, since moving to Southern California, it…
February 7, 2018 Columns by Cathy Chester 6 ways to help you cope with and accept your MS diagnosis Last updated April 25, 2023 At the intersection of hope and despair is a bench to sit and rest. At least, I hope there is. The bench gives us an opportunity to take a breather from the stresses of the world. Itās a chance to sit and think about which…
February 7, 2018 Columns by Judy Lynn Carded at Costco I was carded while at Costco with my son just before Christmas. Normally, Iām flattered when asked for ID, but this time was different. The request wasnāt from the cashier as my vodka rolled by, snug between the peppermint cocoa and persimmons. No, the request came from a police…
February 6, 2018 Columns by Teresa Wright-Johnson I Choose to Address Chronic Illness on My Terms Who decides how we choose to chronicle our journey of illness? I have thought about this for the past few days. Many people believe that sharing the negative aspects of illness exacerbates fear and pessimism. The mindset is that if our words are inconsistent with hope and optimism, we…
February 6, 2018 Columns by Ed Tobias Is It Time to Change Your MS Doctor? The other day, as I cruised around various MS internet groups, I came across a lament that I’ve seen before. But this one, for some reason, jumped out at me. A woman with MS wrote that she was “fortunate” that her RRMS symptoms were relatively minor: fatigue, numbness in…
February 5, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Testosterone and MS, Ocrevus in the UK, Enhanced MRI Technology, Ublituximab Trial Results Researchers Identify Testosterone-triggered Molecule That Protects Men From MS This finding is an extension of research that has already indicated that a higher testosterone level reduces the chance of a person developing multiple sclerosis (MS). This new research focuses on a testosterone-related molecule that,Ā these…
February 2, 2018 Columns by Jamie Hughes Rest on the Water: A Flirtation with Flotation to Find Silence Iām currently working on an essay about the power of silence. And, in the process of planning this thing, I realized I donāt do so well with it ā especially at night. So, to work my way through this topic, I began looking for ways to experience true silence.
February 2, 2018 Columns by John Connor In Me Shorts, Midwinter: Why a Kilt Would Be Welcome It was Burns Night last week, which is always a joy. I love whisky and am very partial to haggis (tricky to source, as we only buy the outdoor roving haggis!). A few years before MS hit, I went to a Burns Night supper where the only thing…
February 2, 2018 Columns by Ed Tobias Affording Your MS … or Not, You’re Likely Paying Either Way Have you been in this Catch-22? You had great medical insurance when you were working. But, you’re not working anymore. Your insurance now comes with a $6,000 deductible and it doesn’t cover any medications. That $6,000 is about a fifth of your yearly income.Ā You took early retirement because of…
February 1, 2018 Columns by Tamara Sellman The MS Alphabet: Plaque, PRV, Placebo, and Other ‘P’ Words (Part 5 of 7) Editorās note: Tamara Sellman continues her occasional series on the MS alphabet with this column referencing terms starting with the letter “P.” This column is fifth in a series of seven. Symptoms of MS Plaque This is one of the common…
February 1, 2018 Columns by Jennifer (Jenn) Powell Navigating Relationships with MS Relationships are work. When you add in a chronic, progressive disease, the work becomes exponential. This is not to say work is a bad thing, as we reap immense rewards when we put effort into anything. Rather, anything worth doing…
February 1, 2018 Columns by Laura Kolaczkowski Minority Engagement in MS Research Engaging all types of people for research isnāt just a nice thought. It is critical to obtaining research results that will be meaningful. Middle-aged white women are often the people who volunteer for studies. Men, young people, and most significantly, people of color, lack representation in studies. According…
January 31, 2018 Columns by Mike Knight Dazed and Confused: Tips for when Gravity Calls Nothing resets your thinking like bouncing your head off a hardwood floor. At least, for me. It was about 10 p.m. on a Saturday night, and we were shutting down the house. That routine consists of turning lights off, locking doors, and plugging in phones and…
January 30, 2018 Columns by Ed Tobias The Big Pharma-Government Revolving Door Is Spinning You may have heard that there’s a new secretary of Health and Human Services (HHS) in the United States. HHS is the department that guides the nation’s healthcare programs and policy, and the person in charge has a huuuge influence over the cost and scope of the medical care…
January 29, 2018 Columns by Debi Wilson Tips to Ease Anxiety, an Often Overlooked Effect of MS Since the onset of my MS, I have been acutely aware that stress and anxiety can wreak havoc on my body. Being anxious is not a comfortable feeling, whether you have a chronic illness or not. This past weekend was my husband’s celebration of life service. With his…
January 29, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Medical Marijuana Gum, Brain Stimulation and Fatigue, Gilenya Study, Invisible Diseases Holland Approves Clinical Trial Plans for AXIMās Cannabis-based Gum for MS Pain and Spasticity Because the state where I live has only recently approved the use of medical marijuana, I haven’t had the opportunity to try it for my MS. From what I’ve read, various blends of…
January 26, 2018 Columns by John Connor The Antibiotic Time Loop My arms are heavy. Strong antibiotics have held off a urinary tract infection (UTI)Ā for the last eight weeks ā evolution isn’t on my side. In fact, I’m distinctly beginning to feel like the British Expeditionary Force in Dunkirk in May 1940. Surrounded, with my only hope over the…
January 26, 2018 Columns by Ed Tobias Cooking Dinner when MS Fatigue Has You Down The TV was on as background noise the other day, but the words of the commercial cut right through my noise filter. With a little drum beat in the background, a woman’s voice was saying, “The doctor called me and she was, like, ‘You have multiple sclerosis.'” “Another drug…
January 25, 2018 Columns by Tamara Sellman The MS Alphabet: Provigil, Progression, Plantar Reflex, and Other ‘P’ Words (Part 4 of 7) Editorās note: Tamara Sellman continues her occasional series on the MS alphabet with this column referencing terms starting with the letter P. This post comes fourth in a series of seven. Symptoms of MS Postural tremor Tremors (specifically, cerebellar tremors) are a common symptom of MS. A…
January 25, 2018 Columns by Jennifer (Jenn) Powell Coming out of the Cog Fog I am watching the computer curser taunt my inability to collect my thoughts. Three days out of chemotherapy, my brain is more fried than usual, the fog thick and dense. For those unfamiliar with cog fog (cognitive fog), it is a clouding…
January 24, 2018 Columns by Judy Lynn Hopping Down the Symptom Trail: Myofascial Release It seemed to be such a harmless rabbit hole. After last weekās column on Rolfing ā and a response divided between those who thought it sounded like terrible torture and those who agreed it was torture but they liked it ā I decided to explore some other ideas…
January 23, 2018 Columns by Teresa Wright-Johnson Look to the Hills: Words of Encouragement from a Cancer Survivor to an MS Warrior We endured another devastating loss this week. My beloved sister-in-law, a cancer survivor whom I affectionately called sister, passed away. Although we knew her disease was terminal, she passed away unexpectedly in her sleep. Death is never easy, and no matter how much we try, we cannot entirely prepare…
January 23, 2018 Columns by Ed Tobias Who Are You to Tell Me What MS Therapy I Need? I’m used to seeing insurance companies here in the United States make decisions about MS therapies, including refusing to pay for certain treatments unless other, less expensive ones are tried first. These, of course, are decisions that should be made between patients and their doctors, not by insurers.
January 22, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Ocrevus in the EU, Salt and Cognitive Problems, Searching for Myelin, Tecfidera Tolerance European Commission Approves Ocrevus to Treat RRMS, PPMS Throughout EU This is a biggie. It’s been nearly a year since the FDA approved the use of Ocrevus here in the U.S. Finally, it’s been given the green light in Europe. Canada, Australia, Switzerland, and various countries in…
January 19, 2018 Columns by Jamie Hughes Chicken Soup Has Super Powers Get plenty of rest. Drink lots of warm fluids. Use a humidifier. Gargle and flush your sinuses with warm salt water. Blow your nose early and often. Take over-the-counter medications. Eat some chicken soup. No doubt, you know what Iām talking about when you read this list of…
January 19, 2018 Columns by John Connor It’s Been a Bad Week It was late. I dropped the TV remote on the bedroom floor. No biggie. I was sitting on my commode (don’t worry, it was in its chair configuration!) and was reasonably close to the ground. No thinking involved, I leaned over to pick it up as I’ve done many,…