June 9, 2017 Columns by Ed Tobias Self-Injecting Betaseron? There’s Now an App for That Have you ever hit a brick wall trying to self-inject? I have. It was with Avonex, the first DMD that I used. To make a long story short, after a couple of years of poking myself in the thigh muscle, I just couldn’t do it anymore. That’s…
June 8, 2017 Columns by Laura Kolaczkowski CMSC Revises Recommendations for Gadolinium Use in MRIs Editor’s note: Patient columnist Laura Kolaczkowski attended the 31st annual Consortium of Multiple Sclerosis Centers conference in New Orleans. The information in this article was taken from an interview session with the physicians. Ā The use of gadolinium, whichĀ is the contrast agent often used during MRIs for multiple…
June 8, 2017 Columns by Tamara Sellman The MS Alphabet: EVP, Exacerbations, Estriol and more ‘E’ words (Editorās note: Tamara Sellman continues her occasional series on the MS alphabet with this first of two parts on terms starting with the letter āE.ā) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and…
June 7, 2017 Columns by Judy Lynn Cruising Toward Solutions for the Other MS ā Motion Sickness This summer I will venture out on an Alaskan cruise with my mother and older sister. The beautiful trip through the Inside Passage is on our collective bucket list and weāve been planning it for a few years. I am looking forward to the ease of travel afforded…
June 6, 2017 by Patricia Silva, PhD MS and Catheterization, Part 1: Bladder and Urethra Malfunction Solution Catheterization was one of my biggest fears when first officially diagnosed with MS in 1994. As the years went by I thought I might be one of the few patientsĀ who do not experience malfunction in the urinary system. Then, in 2012, something changed. I went from having to…
June 6, 2017 Columns by Teresa Wright-Johnson The Importance of Cultivating Your Circle Support is a crucial component in fighting chronic illness and adversity. Our humanity connects us and we thrive on relationships. Support may come in the form of family, friends, social services, groups and countless other methods. I have been fortunate to have an abundance of support for which…
June 6, 2017 Columns by Ed Tobias Jumping to Conclusions About a MS Treatment Those of us with multiple sclerosis are always on the alert for new treatments. So, when a common, inexpensive and easy-to-administer drug recently appeared on the radar as a possible MS treatment, it wasn’t surprising that dozens of social media folks jumped to relay word of it. Their…
June 5, 2017 Columns by Debi Wilson Transitioning from MS Patient to Cancer Caregiver I am making the transition from multiple sclerosis patient to cancer caregiver. On May 11 my family’s world turned upside down when my husband of 41 years was diagnosed with advanced Ā pancreatic cancer. My caring husband, who has always loved and protected me, is now the one in…
June 5, 2017 Columns by Ed Tobias MS News That Caught My Eye: An Acne Drug, a High-Cost Gel, Good News About Lemtrada, and Getting Off MS Drugs In case you missedĀ them, here are some news stories that appeared in MS News Today that caught my eye over the past week. Acne Therapy Reduces Rate of Multiple Sclerosis Progression, Canadian Study Reports At first glance, the headlines about this drug announced what seemed to be…
June 2, 2017 Columns by Jamie Hughes One Man’s Playground is Another Man’s Horror Multiple sclerosis has a way of messing with oneās head. Whether itās emotional or psychiatric disorders, fatigue, brain fog, or physical problems, thereās a lot to wrestle with. And to effectively battle this disease requires you to be in a certain state of mind. Let me give…
June 2, 2017 Columns by John Connor Lemtrada II: My Right Foot (Hopefully) Read John Connor’s previous column, “Lemtrada I: This Island Couch.” Apologies for the pic of my edemaāriddled right foot. If I put whiskers on it, my big toe could do a damn fine impersonation of a seal. On the bright side, a month ago it was twice this…
June 2, 2017 Columns by Ed Tobias An ‘MS House’ That Lets You Walk in My Shoes (Photo by Andreea Antonovici) A few months ago, I wrote about a bicycle that mimics the symptoms of multiple sclerosis. Now, I’ve discovered that there’s an “MS House” that allows a healthy person to experience some of what life is like for someone who lives with MS.
June 1, 2017 Columns by Laura Kolaczkowski MS Comprehensive Care: What My Clinic Teammates are Doing I couldnāt help but smile when I saw “MS Comprehensive Care: A Team Sport“Ā listed as the title of the John F. Kurtzke Memorial Lecture at the opening of the Consortium of MS Centers 2017 Annual Meeting. Kurtzke, according to the program, was a strong advocate of the…
June 1, 2017 Columns by Tamara Sellman The MS Alphabet: DMD, Dystonia, Dawson’s Fingers and Other ‘D’ Words (Editorās note: Tamara Sellman continues her occasional series on the MS alphabet with this second of two parts on terms starting with the letter āD.ā) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and…
May 31, 2017 Columns by Debi Wilson MS Burning Feet and Hands Could Be Erythromelalgia Erythromelalgia is a rare and painful multiple sclerosis (MS) symptom that I (and others with MS) experience. Almost every night my feet have a tight, swollen feeling accompanied by a terribly hot, burning sensation. It is usually cool to the touch but can feel hot at certain…
May 31, 2017 Columns by Judy Lynn Saving Money, Disabled Style: A Response to Invisible Costs A few weeks ago, I wrote about some of theĀ invisible costs of living with MS. Writing that column really got my mind thinking about all the ways that my MS costs me money. In fact, I couldnāt stop thinking about it! In the days that followed, I…
May 31, 2017 Columns by Mike Knight How Pilates Changed My Lifeā¦And My MS, Part Two: Mariska Breland Practices What She Teaches Like so many people with MS, Mariska Breland remembers the diseaseās onset as a combination of strange, seemingly disparate maladies that included tingling in her left thigh, numb feet, skin that felt ātoo thickā around her toes, foot drop, and double vision. One left her…
May 30, 2017 Columns by Patricia Silva, PhD ‘Disabled? You Seem Perfectly Fine to Me!’ The casual remark, “You seem perfectly fine to me!”Ā bothers me (and others) becauseĀ eligibility forĀ Social Security Disability benefits requires proving we are not fine. In fact, we must prove that we are disabled, which is no small burden when we “seem perfectly fine.” ‘Looking’ disabled An acquaintance of mine…
May 30, 2017 Columns by Teresa Wright-Johnson ‘Patiently Awakened’ Explained: The Story Behind the Column Someone asked me to fully explain the title of my column, “Patiently Awakened.” MyĀ column title provides a brief description of what it means to me and my intentions for readers. I thought it would be best to elaborate in the column itself. Patient as a noun refers…
May 30, 2017 Columns by Ed Tobias MS News That Caught My Eye: A New Study about Lemtrada, An Easy Way to Improve Balance, A New PML Case Reported and Kudos to Us Relapse after First Lemtrada Course No Indication of Poor Long-Term Outcome, Study Finds Some MS patients being treated with Lemtrada report new exacerbation after they complete round one of the drug, and they wonder if this means the drug isn’t working.
May 26, 2017 Columns by Teresa Wright-Johnson We Are Not Alone: Supporting Our Loved Ones as They Grieve Our Chronic Illnesses Grief is something that we have all experienced. The process is a natural human response to tragedy and loss. It is often cyclical and traumatic. I have read and written various articles referencing the grief process. Discussions with my niece and my dear friend led me to write…
May 26, 2017 Columns by John Connor Lemtrada I: This Island Couch The latest drug media storm to erupt in Britain is “Spice,” which causes users to become living statues. Exactly a year ago, I became a living statue for six weeks, and not one reporter hassled me. That would have broken the monotony! We all have our own version…
May 26, 2017 Columns by Ed Tobias Speak Up to Keep the Cost of MS from Costing You More I’ve just been reminded, as someone with multiple sclerosis, how fortunate I am to have good medical insurance. Unlike most other countries, where medical care is a right, in the U.S. that care is a privilege. Here the quality of care and too often the availability of that…
May 25, 2017 Columns by Tamara Sellman Electric Stimulation as a Drug-Free Option for Managing MS Pain One of the biggest ongoing threads we have in the forum I help admin revolves around the subject of pain. We all know how pain can be disabling, or if not disabling, still influential over our moods, our ability to sleep, our energy levels,…
May 24, 2017 Columns by Cathy Chester Is There a Link Between Gut Bacteria and Multiple Sclerosis? The past year has taken its toll on my digestive system. Iāve experienced alarming amounts of pain, bloating, diarrhea, and more fatigue than I normally experience from MS. All of these issues caused great stress both emotionally and physically, so it was no surprise when my…
May 23, 2017 Columns by Ed Tobias Would You Share Your Info with an MS App? A smartphone app has been designed to collect lots of information related to your multiple sclerosis āĀ things such as physical and cognitive test results, MRI images, and even genetic data. The hope is that via the app researchers will be able to collect a lot of patient data…
May 22, 2017 Columns by Debi Wilson A Walk in the Park Reminds Me That I Am Not Alone My walk in the park usually consists of watching every one of my steps, while conserving my energy so I can finish the trek. In the midst of my walk, I remain acutely aware of how weak my legs are, and hope they don’t give out on me. For…
May 22, 2017 Columns by Ed Tobias MS News that Caught My Eye: Risk Factors, Biotin and Symptoms, Pills, Shots or IVs, and More In case you missedĀ them, here are some news stories that appeared in MS News Today that caught my eye over the past week. Ocrevus Market Entry Already Changing Dynamics in MS Treatment Choices, Spherix Analysis Suggests Are pills, shots, or infusions the therapy…
May 19, 2017 Columns by Ed Tobias An MS Garden Grows in Derby Those of us with multiple sclerosis know how difficult it is to describe our journey. Words frequentlyĀ are inadequate for that task. But, at Derby College in England,Ā horticulture students and their instructors have found a way. They’ve teamed up with local MS Society branches to create a 30-foot-by-40-foot garden…
May 18, 2017 Columns by Laura Kolaczkowski Defining Resiliency in MS and Ideas on Bouncing Back How well do you bounce back when MS gets you down? An article called āBouncing back again, and again: a qualitative study of resilience in people with multiple sclerosisā caught my attention because bouncing back is something I donāt do as well these days. I believe resilience means to be…