April 23, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Ocrevus Experiences, Early MS Treatment Study, Cognitive Decline 5 MS Patients Across US Talk About How Ocrevus Has Changed Their Lives There’s high interest in Ocrevus (ocrelizumab), one of two disease-modifying therapies that have shown promise for reversing some multiple sclerosis (MS) symptoms. (The other is Lemtrada.) So, I’m including this article. Keep in mind,…
April 20, 2018 Columns by Jamie Hughes A Look Around the Terminal Itās spring ā at least, itās supposed to be ā so getting stuck at the airport due to snow was the last thing I expected during a recent trip to Grand Rapids, Michigan. But thatās exactly what happened to me on Sunday. I sat with thousands of fellow passengers,…
April 20, 2018 Columns by John Connor It’s the Little Things Really big things are going on in the world. WW3 is againĀ flagged as a possibility. My world is considerably smaller. It’s mostly my bedroom. I can get out of it, but it takes a considerable effort. In the last seven days, I only exited it once. Last night, I…
April 20, 2018 Columns by Ed Tobias Is This the Key that Unlocks Stem Cell Treatments for MS? Americans who want to treat their MS with a stem cell transplant have a tough road to follow. They’re forced to travel to Russia, Mexico, or somewhere else out of the country and to spend a lot of money to avoid the U.S. Food and Drug Administration’s stem cell…
April 19, 2018 Columns by Jennifer (Jenn) Powell Pain Meds Help Me Live There is no guidebook to living with a chronic, progressive, and incurable disease. Even if such a book existed, it would only be somewhat applicable, as things change on a daily basis. We are all as unique as this disease, yet have one commonality: pain. Before my multipleĀ sclerosis…
April 17, 2018 Columns by Ed Tobias I Hope My MS Treatments Are Done for Good With apologies to Edgar Allan Poe, quoth the Lemmie, “Nevermore.” As I write this, the final brown bag of Lemtrada (alemtuzumab) has just begun to drip into a vein in my left arm. If all goes “as advertised,” this will be the final disease-modifying therapy I’ll ever receive.
April 16, 2018 Columns by Debi Wilson When Did Showering Become Such a Thrill Ride? My morning ritual of showering for a fresh start to my day has progressed to a once-a-week occurrence. Like everything else that my multiple sclerosis (MS) affects, less shower time is not by choice. I take sponge bathsĀ daily of course, but actual showers are reserved for when I…
April 16, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: New Lemtrada Side Effect, MS Cooling Vests, and Drug Infection Risks Acute Acalculous Cholecystitis Linked to Lemtrada Use in RRMS Patients, FDA Reports The makers of Lemtrada have added the possibility of another serious side effect to the warning carried on the therapy’s label. The addition follows a Food and Drug Administration review that discovered a potentially serious…
April 13, 2018 Columns by John Connor Back to the World The stars sometimes align, even for us atheists. My son was making a fleeting weekend visit from his last year at his university. It’s all we were going to see of him over the Easter period. He’s taking it very seriously and aiming forĀ top gradesĀ in math. The week…
April 13, 2018 Columns by Ed Tobias MS Forums Section Added to MS News Today: Join Our Conversation Do you have a question or comment about MS? Can you answer someone else’s question? We’ve just created an MS Forums section on Multiple Sclerosis News Today designed to spark conversations about our MS and to try to provide some answers from reliable sources when you have a…
April 12, 2018 Columns by Tamara Sellman The MS Alphabet: UTI, Vertigo, White Matter Lesions, and Other ‘U’ Through ‘Z’ Terms Editorās note: Tamara Sellman continues her series on the “MS alphabet” with this column referencing terms starting with the letters “U” through “Z.” This is the last post in this series.Ā Symptoms of MS Uhthoff’s phenomenon People with MS are often heat-sensitive and experience overheating due to…
April 12, 2018 Columns by Jennifer (Jenn) Powell Living in the Solution: My Life with Progressive MS Today is Walk MS, and for the first time since my diagnosis, I am not there. While I am not one to feel sorry for myself, this stings. I miss being among the sea of impassioned orange warriors. I miss the tears that fall as cheers accompany me through…
April 12, 2018 Columns by Laura Kolaczkowski An Ocrevus Update Has Me Cautiously Optimistic After a delay in treatment in late December thanks to a nasty head cold, and the after-effects of contracting the flu in February necessitating another delay, I finally received my second six-month dose of Ocrevus (ocrelizumab)Ā in mid-March. Much like the first time, the infusion was uneventful. I had no…
April 11, 2018 Columns by Mike Knight ‘OT’ in the House: Occupational Therapy Is Improving My MS Home Life It is noon on Wednesday, and I am sitting in a chair in our living room. My wife holds two books against my hips, one on either side, while Stefani, my occupational therapist, measures the width ā measuring me for a wheelchair. Like a lot…
April 10, 2018 Columns by Teresa Wright-Johnson A Message of Hope from a Firefly While growing up, I loved seeing fireflies (or lightning bugs, as I called them) at night. My friends and I would chase them, trying to grasp one. There was something about the light and their ability to shine in the blanket of darkness that engulfed us. We felt…
April 10, 2018 Columns by Ed Tobias Lemtrada Round 2: My Drip Stops Here As you read this, I likely will be in the middle of, or finished with, my second round of Lemtrada (alemtuzumab). Hopefully, this will be the final round of this disease-modifying therapy (DMT), and the final MS treatment of any kind, for me. Though some have required more,…
April 9, 2018 Columns by Debi Wilson Taking My MS on a Road Trip OnĀ Good Friday, my family and I took a three-day road trip to lay my husband to rest. Our goal was to honor his last wishes and set his ashes free in the wilderness that he so loved. My husband enjoyed going archery hunting almost every fall, until a…
April 9, 2018 Columns by Ed Tobias MS News That Caught My Eye Last Week: Online Meditation, Coordination of MS Care, a Walking Drug Test, Stopping Your DMT Online Meditation Course Seen to Help MS Patients Manage Symptoms in Clinical Trial Can someone use a website to learn how to meditate, and then do it well enough to have their MS symptoms improve? Well, maybe. This small study reports that patients who completed an online…
April 6, 2018 Columns by Jamie Hughes You Only Think You Know When I tell people I have multiple sclerosis, I usually get one of three responses: ā¢ “Oh, no! I feel so bad for you!” (Pity) ā¢ “Is that the one with the telethon?” (Confusion) ā¢ “I know all about that disease! My sister-in-lawās cousinās college roommate has…
April 6, 2018 Columns by John Connor Be My Wife Let me introduce you to my wife, Jane, by cheekily lifting the title “Be My Wife” from possibly the only accessible track off Bowie’s seminal ’70s album, “Low.” Through these weekly columns I’ve mentioned her often enough,Ā but I’ve never formally introduced her. Mea culpa. I didn’t have…
April 6, 2018 Columns by Ed Tobias Do Online Medical Records Make You Worry? A few weeks ago I warned of the dangers that are possible when people turn to social media for information about their MS. But there’s another danger that technology and the internet have brought us: access to our own medical records. Sandra G. Boodman has taken…
April 5, 2018 Columns by Tamara Sellman The MS Alphabet: TENS, T-Cells, Tinnitus, and Other ‘T’ Words Editorās note: Tamara Sellman continues her series on the “MS alphabet” with this column referencing terms starting with the letter “T.” Symptoms of MS Tinnitus You may already know this as “ringing in the ears.” But ringing as a descriptor is a bit subjective, as tinnitus…
April 5, 2018 Columns by Laura Kolaczkowski Doctor Connections Have you ever been touched by the actions of one of your doctors? I hope we all have experienced special moments with our care providers because these times break down the authoritarian nature of medicine and allow us to interact as people rather than patients. A heartwarming moment took…
April 4, 2018 Columns by Judy Lynn 2 Great Things that Go Great Together: Calcium and Magnesium While Reeseās Peanut Butter Cups are the true ātwo great things that go great together,ā calcium and magnesium take first place for those with MS. Many proponents of special diets for MS encourage the consumption of foods high in this mineral dynamic duo (along with other vitamins needed for…
April 2, 2018 Columns by Debi Wilson What It’s Like Constantly Living with Primary Progressive MS My column last week was a recap of my journey to a primary progressive multiple sclerosis (PPMS) diagnosis. This week’s column continues that theme by showing a glimpse of what it is like to live with PPMS on a daily basis. To say that having a disability like…
March 29, 2018 Columns by Tamara Sellman The MS Alphabet: Stem Cell Therapy, Sx, Synapse, and Other ‘S’ Terms Editor’s note: Tamara Sellman continues her series on the “MS alphabet” with this column referencing terms starting with the letter “S.” Last in a series of five. Symptoms of MS Spasticity This refers to the muscle stiffness and issues with muscular control and abnormal muscle tone that…
March 29, 2018 Columns by Jennifer (Jenn) Powell Shining Through Boundaries I spent the majority of my life as a people pleaser. From the time I was young, I equivocated “yes” with likability; please and be pleased. As the years passed, compromising my own needs became second to meeting those of others. While I genuinely enjoy…
March 28, 2018 Columns by Mike Knight Brace Yourself: My Ups and Downs with AFOs It was late May 2014, and my wife and I were on our first trip to the Cleveland Clinic. Weād been to Cleveland for a wedding a few years earlierĀ but had been too busy to explore. We booked a room at the…
March 28, 2018 Columns by Cathy Chester Here’s How to Honor the First #ProgressiveMSDay Weāre all familiar with the yearly observance of MS Awareness Week and MS Awareness Month to raise awareness about multipleĀ sclerosis. Considering that so many rare diseases, such asĀ Graves’ disease or Ehlers-Danlos syndromes, go largely unnoticed, the MS community is blessed with its fair…
March 27, 2018 Columns by Teresa Wright-Johnson Moving Forward After MS Awareness Month We are approaching the conclusion of National Multiple Sclerosis Awareness Month, but those of us with MS know that the responsibility to educate is unending. I was pondering what my topic would be this week. As awareness month exits, I want to proffer an encouraging message. This…