April 19, 2017 Columns by Mike Knight Getting a Second Opinion: Three Heads ā or More ā are Better Than Two It was my 2015 annual check-in, and my neurologist and I were in the exam room. I was sitting on one of those little stools with wheels, he was leaning across the exam table. We had just finished discussing my steadily worsening symptoms and treatment plan, which consisted…
April 17, 2017 Columns by Debi Wilson Address Primary Symptoms to Avoid Secondary Ones Multiple sclerosis is a very complex disease that attacks the central nervous system. The symptoms MS generates are random, affect everyone differently, and are categorized either as primary MS, or secondary MS, symptoms. Primary MS symptoms are the direct result ofĀ the disease itself ā byproducts of the damaged…
April 15, 2017 Columns by John Connor There’s Something Wrong with Both of Us There are a few moments when life changes. In my day, it was meeting your partner across a crowded room. Now it’s sadly the flick of an app. What hasn’t changed is that only later doĀ you realize this really was a moment. This isn’t a story about romance…
April 13, 2017 Columns by Tamara Sellman The MS Alphabet: CIS, Copaxone, Contracture and More ‘C’ Terms (Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this secondĀ of three partsĀ on terms starting with the letter “C.”) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and Qs, dot your Is, cross your Ts,…
April 13, 2017 Columns by Cathy Chester Why Staying Informed About Multiple Sclerosis is Important A lot has changed in multiple sclerosis research and treatment since I was diagnosedĀ 30 years ago. Here are a few things I was told originally that are no longer true: Thereās less than a 1% chance for a child to inherit their motherās…
April 12, 2017 Columns by Jamie Hughes Spring is an Apt Time to Reflect on MS and Hope T.S. Eliotās opens his masterwork The Waste Land with four stunning lines of verse: April is the cruellest month, breeding Lilacs out of the dead land, mixingĀ Memory and desire, stirringĀ Dull roots with spring rain.Ā It seems odd to say that April is…
April 12, 2017 Columns by Laura Kolaczkowski RMS Patient Using Ocrevus in Trial: ‘I Feel Great’ Pamela Arterbridge is one of 70 people at Ohio State Universityās Multiple Sclerosis Center taking part in the open-label part of aĀ clinical trial for ocrelizumab, nowĀ best known asĀ Ocrevus.Ā She is a patient of Dr. Michael Racke, who is a pioneer in the field of B-cell treatmentsĀ for MS,…
April 11, 2017 Columns by Patricia Silva, PhD Importance of Elevators for Universal Housing You might think that the Fair Housing ActĀ required multifamily buildings to have elevators, but no, it doesn’t. A multifamily dwelling of four units that does not have an elevator is not required to have one. However, the ground floor units must be fully…
April 11, 2017 Columns by Teresa Wright-Johnson Chronic Illness and Dating: the Benefits of Transparency The dating process is the prerequisite to most serious relationships. We invest a significant amount of time to assess whether we are compatible with the person of interest. Dating should beĀ fun and we should look forward to future possibilities. For the past few days I’ve been thinking about dating…
April 11, 2017 Columns by Ed Tobias Need Help Paying for Your MS Drug? With last month’s approval of the multiple sclerosis drug Ocrevus, I’ve again heard the plea “But how can I afford it?” Ocrevus carries a price tag of about $65,000 a year. That’s not high compared to some other MS drugs, but it still can mean a higher…
April 10, 2017 Columns by Debi Wilson A Game of Spin the Bottle, Then Mono, EBV and MS A popular theory of what contributes to developing multiple sclerosis is a disease called mononucleosis (also known as glandular fever), which can be caused by Epstein-Barr virus (EBV). It is thought that the virus weakens our defenses in the blood-brain barrier, allowing white blood…
April 10, 2017 Columns by admin Pick of the Weekās News: Progression, Antibiotics, Ocrevus, Stem Cells, B-Cells Hereās my Pick of the Weekās News, as published by Multiple Sclerosis News Today. Canada, Worldās Multiple Sclerosis Capital, Launches 3-Way Collaboration to Research MS Progression Why some people develop primary progressive MS and others have the relapsing type, and why a many relapsing patients develop secondary…
April 7, 2017 Columns by Patricia Silva, PhD ABLE Act Improvements Reintroduced in Congress The ABLE Act improvement bills were reintroduced into CongressĀ this week and referred to committee on April 4.Ā The billsĀ died in committee in 2016 before an active campaign could garner enough attention in that election year. I urge all readers in the U.S. toĀ call yourĀ representatives and senators to encourage them to…
April 7, 2017 Columns by John Connor One Day in the Working Life of John Peter Connor These might be the days of the gig economy, but I’ve been doing one every Tuesday for 27 years. My particular white van (for US readers the delivery drivers of such are a British stereotype of the new Amazon order ā or lack of it) is a comedy vehicle…
April 7, 2017 Columns by Ed Tobias Ocrevus: Should I Switch? There was much fanfare when the multiple sclerosis drug Ocrevus (ocrelizumab) finally was approved by the U.S. Food and Drug Administration last week. Perhaps a little too much fanfare? For example, a story broadcast on the NBC Nightly News focused on a woman, apparently a participant in an…
April 6, 2017 Columns by Laura Kolaczkowski Ohio State Neurologist Shares Insight About MS B-Cell Therapy Ocrevus A prominent neurologist, who was involved in early research into B-cell therapy, tells Multiple Sclerosis News TodayĀ about his positive experience of using ocrelizumab, now branded Ocrevus, with patients. Michael Racke, MD, Department of Neurology at The Ohio State University WexnerĀ Medical Center took time to talk with me about…
April 6, 2017 Columns by Tamara Sellman The MS Alphabet: CAT, Clonus, Chemotherapy and More ‘C’ Words (Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with the first in a three-part series of terms starting with the letter “C.”) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and Qs, dot your…
April 6, 2017 Columns by admin ‘Fabulous’ Ocrevus Lights the Way to a Brighter, Hopeful Future, MS Nurse Says Ocrevus is a “fabulous” drug that does wonders for those who respond to it. Thatās the view of an MS nurse practitioner in Florida, with whom I spoke this week. Tricia Pagnotta works at the Multiple Sclerosis…
April 5, 2017 Columns by Judy Lynn If We Took a Holiday (from Our Meds) It Could Be So Nice! I was a teenager during the 1980s and cannot say the word āholidayā without Madonna’s song playing briefly in my head. For most holidays the perky music seems okay, but for discussion of a “drug holiday”Ā it feels a bit off. Sort of like, āYay! You have a chronic…
April 5, 2017 Columns by Mike Knight Going All In for Ocrevus ā Together āIs the MS drug news good for u?ā my friendās text asked. It was Wednesday morning, March 29. Genentech had just announcedĀ that Ocrevus, the āFirst and only approved disease-modifying therapy for primary progressive form of multiple sclerosis (PPMS) ā one of the most disabling forms of…
April 4, 2017 Columns by Teresa Wright-Johnson Ocrevus: FDA Approval Triggers Hope, Optimism ā and Concern ā Among MS Patients The past few days have been remarkable in the multiple sclerosis (MS) community, with the U.S. Food and Drug Administration (FDA) approving Ocrevus to treat relapsing MS (RRMS) and primary progressive MS (PPMS) in the United States. Ocrevus ā adminstered intravenously every six months ā is the first drug…
April 4, 2017 Columns by Ed Tobias Ampyra: A Generic for the MS ‘Walking Drug’ Wins a Round in Court Ampyra is marketed as the only multiple sclerosis (MS) drug that is designed to increase an MS patient’s walking speed. Clinical studies show that patients who use the drug walk as much as 20 percent faster. Ampyra improved my speed, several years ago, when I was on…
April 3, 2017 Columns by Debi Wilson Is Ocrevus Right for Me? So Close, Yet So Far History has been made because of a major breakthrough for multiple sclerosis sufferers everywhere. Ocrevus (ocrelizumab),Ā by Genentech, has been finally approved by the U.S. Food and Drug Administration. It is the first drug treatment that includes my type of MS, primary progressive. This is what I’ve…
April 3, 2017 Columns by admin MS Patient’s Pick of the Week’s News: Ocrevus and Its Approval, Reactions, Development, Dispensing, Other Countries Today, myĀ Pick of the Week’s News is devoted to various news stories,Ā all published by Multiple Sclerosis News Today,Ā about FDA approval of Genentech’s OcrevusĀ as an MS treatment. FDA Approves Ocrevus as 1st MS Treatment for Both Relapsing and Primary Progressive Forms Last weekās approval of Ocrevus (ocrelizumab) by…
March 31, 2017 Columns by Jamie Hughes A Word, If You Please Thirteen years ago, a neurologist sat on the edge of my hospital bed and told me, āYou have MS. Itās not the end of the world. Thereās more on the internet than I could ever tell you about, so I suggest you do some research. Good night.ā Since…
March 31, 2017 Columns by John Connor Request for Tennis Lessons Leads to Academy Teaching Many Disabled In the summer of 2012 David Bowie’s song “Heroes” became the anthem of the London Olympics despite Bowie turning down an invitation from British director Danny Boyle to be part of the opening ceremony. Gracious as ever, Bowie agreed to a meeting. Boyle had a lot to thank him for.Ā Bowie…
March 31, 2017 Columns by Ed Tobias Scooters: Don’t Let Pride Block Your Path to Independence To scoot or not to scoot? Is is better to drag your legs around for as long as you can, or to give in and get yourself a set of electric wheels? That decision prompted the following vent on a multiple sclerosis Facebook group recently: “I’m just…
March 30, 2017 Columns by Laura Kolaczkowski Making Some Valid Points About Acupuncture and MS Have you ever used acupuncture?Ā I have a number of times and would doĀ so more often if it were a medical service covered by my insurance. Unfortunately, for now, most complementary treatments we have available to help with the symptoms of multiple sclerosis are not covered by commercial insurance. In…
March 30, 2017 Columns by Tamara Sellman United Airlines Dress Code is Wrong, Especially for MS Patients It appears my favorite way to fly ā wearing leggings or yoga pants ā isn’t sanctioned by United Airlines. Fortunately, I’m not one of their employees, and I am not related to one who might be able to share free travel passes with me. HowĀ sad. Normally that would be a…
March 30, 2017 Columns by admin Dan Says Treasure Your Caregiving Hero Caregivers are in the spotlight during MS Awareness Month and, as it draws to a close, one man with multiple sclerosis is calling for everyone with the disease to recognize them. Dan Melfi, who lives in the…