May 22, 2018 Columns by Ed Tobias I Have MS and I’m Very Lucky National Nurses Week was earlier this month. I’m a little late saying it, but, āThank you, nurses.” And doctors. I’m really a lucky guy. Lucky to have had fabulous nurses. Lucky to have had a couple of top-notch neurologists. My luck began in August 1980 with Dr. Stanley…
May 21, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: PML Treatment, Gilenya for Kids, Rituximab, and an MS trial that is Enrolling Complications from Gilenya Treatment Managed Successfully, Case Report Says This wasn’t a minor complication. It was a version of PML, a brain disease that can be fatal. PML is also a known side effect of Tysabri, so the report of a successful treatment should be important to…
May 18, 2018 Columns by Jamie Hughes When the Bomb Goes Off Itās easy to be lulled into a false sense of security, to think youāre the supreme authority in your life. And when that ersatz truth is ripped away, as it was for my husband and me the last week, it can be hard to regain your footing. Iāll spare…
May 18, 2018 Columns by John Connor Chained to My Desk The tinkling laughter of tiny children filters through the windows of my bedroom. It’s a sunny Sunday afternoon. In years past, I would be sitting in the garden watching my grandnieces play. Undoubtedly with a large jug of Pimm’s that I would have concocted for the assembled adults. We’re…
May 18, 2018 Columns by Ed Tobias A Pediatric MS Medication Gets the OK Until about a week ago, no medication was approved in the U.S. to treat patients with pediatric-onset MS (POMS). Now there is one. The Food and Drug Administration (FDA) has given its OK to use Gilenya (fingolimod) to treat relapsing MS in children and adolescents starting at…
May 17, 2018 Columns by Jennifer (Jenn) Powell With MS, I Have Learned the Importance of Being My Own Best Advocate Quality healthcare is imperative when living with a disease such as multiple sclerosis. While the operational definition of “quality” varies from person to person, I find it to be contingent on the same variable: the doctor/patient relationship. A relationship between a doctor and a patient is symbiotic. Any healthcare…
May 15, 2018 Columns by Ed Tobias Healthcare Costs Can Depend on Where You Live A new survey by the Kaiser Family Foundation finds that healthcare costs in the U.S. are increasing faster than general inflation. AsĀ character Private Gomer Pyle used to say on his 1960s TV show, “Surprise, surprise, surprise!” Really, those of us with a medical problem such as MS…
May 14, 2018 Columns by Debi Wilson MS Is Frustrating, So It’s Healthy to Talk About It We all have taken advice or read about how to manage our multiple sclerosis (MS) symptoms. And we can share with our doctors, spouses, children, or friends about our experiences. But a far better emotional therapy is empathizing with a fellow MS warrior. People can’t understand living with MS…
May 14, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: An MS Program for Young Adults, Rituximab Report, Repairing Myelin, and Reducing Inflammation Organizations Join Forces to Launch New Adventure Program for Young MS Patients It seems we too often ignore the needs of younger people who have MS. (I’ve written a couple of columns about this.) This program isn’t a medical approach, but it may serve some other…
May 11, 2018 Columns by John Connor Crawling to Deadline It’s 3:15 p.m. U.K. time on Wednesday, May 9, 2018. My deadline for this column is actually 3 p.m. Gone are the days of blaming the dog for eating my homework; it’s only in the last few minutes that I’ve actually been able to move a bit. From 8:30…
May 11, 2018 Columns by Ed Tobias MS, Walkers, Wheelchairs, and Guns (Part 2) A little over a year ago, in this column, I asked if it was safe for someone with MS to handle a gun. I wondered whether there would be safety issues due to problems with grip strength, balance, eyesight, and all the other various difficulties people with MS have…
May 10, 2018 Columns by Jennifer (Jenn) Powell My Scars Are Beautiful Our life experiences shape and define who we are. While some wash over us and dissipate, others leave indelible impressions. Both emotional and physical, our scars hold our past and influence our future. We are the totality of these scars and their narrative is powerful. Each is a chapter in…
May 9, 2018 Columns by Cathy Chester The Agony of Decision-making when It’s Time to Switch MS Medications Iām agonizing over an important decision and it’s driving me crazy. Iām usually a quick decision-maker, but this one is tough. I have my analytical hat on, trying to look at my choices from a scientific standpoint. Unfortunately, my anxiety kicks in, and my hat…
May 8, 2018 Columns by Teresa Wright-Johnson My Solemn Truth on Pain and Suffering As some have said, āPain is inevitable; suffering is optional.ā I believe I am an optimistic, grateful, and spiritual woman. With that said, I must acknowledge that I have an irresolute reaction when I hear that suffering is optional. Suffering is defined as the state of undergoing pain, distress,…
May 7, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Mavenclad Analysis, Ocrevus and Vaccines, an MS Rehab Technique, a Cattle Toxin and MS Mavenclad Effective in Treating Highly Active MS, New CLARITY Analysis Shows Mavenclad isn’t approved for use in the U.S. but it is approved in Canada, Europe, and other parts of the world. Here’s another positive study of the therapy. Hopefully, it won’t be much longer before Americans…
May 4, 2018 Columns by Jamie Hughes I Am So Much More than My MS Every personality test and trait indicator quiz I take tells me the same thing: Iām a polymath. Basically, itās a fancy Greek word meaning āa person of wide-ranging knowledge or learning.ā I take delight in gathering interesting facts or stories. I take pleasure in learning for learningās sake. (Hence,…
May 4, 2018 Columns by John Connor Knowing Me, Knowing MS The problem with writing a weekly column is I always need to come up with new ideas. Luckily, or rather, unluckily, MS always throws me a U.S. sports-shaped analogy ā one of those trickily disguised curveballs. I wasn’t even going to attempt to write this week. Not because of…
May 4, 2018 Columns by Ed Tobias Website Shows How Much Money Your Doctor Gets from Big Pharma Biogen, a pharmaceutical company that markets half a dozen MS therapies, is accused of paying doctors to prescribe its medications. A former Biogen employee claimed that the company paid fake consulting and speaking fees to doctors who prescribed Avonex (interferon beta-1a) and Tysabri (natalizumab) in 2009 and 2010.Ā The company…
May 3, 2018 Columns by Jennifer (Jenn) Powell Let Go and Live Six weeks ago, Abby, my golden retriever, had a seizure. I was sitting behind her when she began to rock; I have never moved so fast. I could only see the bloodshot whites of her eyes as she whimpered lightly and I began to wail. I intuitively hugged her,…
May 3, 2018 Columns by Laura Kolaczkowski Ocrevus Shows Promise for Cognitive Function in Relapsing MS One thing weāve all hoped for with our disease-modifying therapies (DMT) is a treatment that will improve our multiple sclerosis (MS) and not just keep it from worsening. The latest studies presented on Ocrevus (ocrelizumab) hold promise that this treatment may have finally arrived. According to recent reports,…
May 1, 2018 Columns by Ed Tobias Is This a Step Toward Lower Medication Prices? Here in the U.S., the price we pay for medications is complicated. The usual process is for a pharmaceutical company to set a high price for a medication when it first hits the market. But, like buying a car, that “sticker” price is negotiable. Health plans use pharmaceutical benefit…
April 30, 2018 Columns by Debi Wilson Is the MRI Contrasting Agent Gadolinium Safe? (Part 2) Part twoĀ in aĀ series. Read part one here. In the last column, I discussed gadolinium’s role in contrasted MRI procedures andĀ a December 2017 warning by theĀ U.S. Food and Drug Administration that the body can retain gadolinium in its tissues and brain for years.Ā I also shared my personal experience with…
April 30, 2018 Columns by Ed Tobias MS News that Caught My Eye This Week: aHSCT Studies, MS Progression in African-Americans, Gilenya for Pediatrics #AAN2018 ā Stem Cell Transplant is Effective Treatment for āAggressiveā MS, Study Shows I like the fact that a study shows that stem cell transplant treatment is effective for aggressive MS. I love the fact that the efficacy was dramatic, reducing theĀ Expanded Disability Status Scale (EDSS) levels…
April 27, 2018 Columns by John Connor Tricks of the Trade I saw my neurologist a few weeks ago for what was effectively an emergency meeting. I’d had the customary two rounds of Lemtrada (alemtuzumab) and still had a relapse. We discussed weighty subjects and there seemed,Ā surprisingly, to still be some hope. It depends on the outcome of an MRI;…
April 27, 2018 Columns by Ed Tobias New DMT Guidelines Are Good for MS Patients The American Academy of Neurology (AAN) has just released some new guidelines about when to begin, change, and end disease-modifying therapies (DMTs) that are used to treat MS patients. The guidelines, published on April 23, encourage aggressive treatment when symptoms of MS first appear. They’re also patient-centric. And…
April 26, 2018 Columns by Laura Kolaczkowski The Need for Follow-through with REAL MS Iām a great starter. How about you? I start projects but often lack the time or motivation to finish them. Hence, I have bins full of yarn waiting to be turned into scarves and lots of seeds that were meant to be planted in the past growing seasons. Itās…
April 25, 2018 Columns by Mike Knight Marking the 1-year Anniversary of ‘MS In Motion’ April is my month. The weather gets warmer, the world gets greener, and everything just generally lightens up. I was born in April. My wife and I were married in April. My favorite holiday is April Foolsā Day. I love…
April 24, 2018 Columns by Teresa Wright-Johnson This Was Me Before Multiple Sclerosis: A Letter to MS At times I find myself speaking of and referencing my life before my MS diagnosis. My thoughts led to the creation of the following epistle. I believe that words are curative and the spirit absorbs what we speak. As you read my letter to multiple sclerosis, remember that you…
April 24, 2018 Columns by Ed Tobias Research Reveals Another Possible Epstein-Barr Virus Link to MS Editor’s note: To learn more about the link between the Epstein-Barr virus and MS, read Ed’s May 2020 column titled “More Evidence Links Epstein-Barr Virus to MS.” For years researchers have believed a link existsĀ between the Epstein-Barr virus (EBV) and multiple sclerosis. But scientists have had…
April 23, 2018 Columns by Debi Wilson Is the MRI Contrasting Agent Gadolinium Safe? (Part 1) When a doctor orders an MRI with contrast, gadolinium is usually the contrasting agent used. Gadolinium is injected into the patient’s vein after the radiologist takes the first round of MRI images. This helps the radiologist receive sharper, more readable images. In the case of multiple sclerosis (MS),…