December 23, 2016 Columns by Ed Tobias Still Waiting on Ocrevus Several months ago I wrote a blog on my personal websiteĀ aboutĀ Ocrevus (ocrelizumab), the first drug that’s designed specifically to treat primary progressive, as well as remitting, multiple sclerosis. The clinical trials forĀ Ocrevus posted excellent results. The buzz in the medical community was good, Ā and it was…
December 20, 2016 Columns by Ed Tobias MS, Mercury and My Mouth When I was a child my teeth had a lot of cavities So, I had lots of fillings in my mouth. The fillings were silver amalgam, which contain about 50% mercury. Mercury is a pretty toxic metal. In fact, these days if you break a thermometer and its mercury spills…
December 16, 2016 Columns by Ed Tobias Lifting a Toast to Andrew Barclay I don’t want to write about Andrew Barclay. But I have to. Because Andrew Barclay could be you or me. Barclay died in early December. He was a former civil servant in the U.K. and a grandfather. He turned 65 on his last birthday. And, Andrew Barclay had multiple…
December 13, 2016 Columns by Ed Tobias My Lemtrada Infusion: Five Days Done I’ll admit I was nervous as I sat in the infusion chair for Day 1 of Round 1 of my Lemtrada (alemtuzumab) infusions. I’d read a lot, and talked with my neurologist a lot, about the drug. I knew the benefits of Lemtrada could be great. My multiple sclerosis…
December 9, 2016 Columns by Ed Tobias Volunteers Needed to Make MS Research Project Meaningful Have you ever wondered how your MS experience compares with others? Your ability to go out and do things? The therapies you’ve used? Your symptoms? Your age and ethnic background? Researchers from the Accelerated Cure Project for Multiple Sclerosis have been collecting this kind information for nearly two years…
December 6, 2016 Columns by Ed Tobias Starting Down My Lemtrada Road Here we go. This is the week my Lemtrada (alemtuzumab) infusions begin. A few weeks ago I wrote about how Lemtrada has been successful in stopping disease progression in folks with relapsing-remitting multiple sclerosis, andĀ those who have transitioned to secondary progressive MSĀ but continue to have relapses. There have…
December 2, 2016 Columns by Ed Tobias Beating the MS Clock I’m 68 years old.Ā I’ve had multiple sclerosis since I was 32. I’m not sure where I expected this disease would take me when I was diagnosed 36 years ago, but I hoped that MS wouldn’t steal too much of my life from me.Ā I certainly never thought of…
November 29, 2016 Columns by Ed Tobias Let the Sun Shine (Moderately) on Your Multiple Sclerosis I love it when the sun is shining. I spend a lot of time outdoors in the summer, despite the impact of the heat on my multiple sclerosis. I love the warmth and the brightness. So, I lather up with sunscreen and I figure that, at least for me,…
November 22, 2016 Columns by Ed Tobias Information Overload Precedes Lemtrada Infusions You know the saying about having too much of a good thing? I think that’s me, right now, as I think about starting infusions of the multiple sclerosis drug Lemtrada on Dec. 5. Lemtrada is supposed to be a super drug. As I wrote in an earlier column,…
November 18, 2016 Columns by Ed Tobias Have Scooter, Will Travel (Part 2) My column, earlier this week, about traveling with a scooter, generated a couple of questions. What do you ride? Where did you get it? How much did it cost? Here are a few answers for the group. Less than a week ago I finally trashed my Pride Sconic, which…
November 15, 2016 Columns by Ed Tobias Have Scooter, Will Travel “Round, round, get around. I get around.” I was humming that classic 1960s Beach Boys tune this morning (yes, I’m that old) as I thought about a feature story that I saw on one of the TV networks recently. The story profiled Cory Lee. Cory has spinal muscular…
November 11, 2016 Columns by Ed Tobias Letter to a Scared Young Woman Dear Lauren Parrott, I know you’re scared. The fears that you shared in your video blog ring true to any of us who have faced the unknowns of a new multiple sclerosis medicine. https://www.youtube.com/watch?v=eS9-nSfvgSI I’ve been there. I’ve gone through three major multiple sclerosis drugs over the…
November 8, 2016 Columns by Ed Tobias Are You Ready for Bed at Noon? It May Be More Than Fatigue I thought I’d finish writing this last night, but I was too tired. Same thing the night before, and I’m sure this sounds familiar to a lot of you. The National Multiple Sclerosis Society estimates about 80% of the people who have MS have fatigue as one of…
November 4, 2016 Columns by Ed Tobias Would You Fund My MS Treatment? (Part 2) “ā¦ in 3 years we went from living decent not rich to poverty and will prob have no utilities soon and maybe homeless.” An MS patient wrote that after I posted Part I of this column a few days ago. “I went threw (sic) all of our savings…
November 1, 2016 Columns by Ed Tobias Would You Fund My MS Treatment? I’m not asking for your money.Ā (At least not yet.) Ā But I’ve recently seen a lot of news stories about MS patients who are. Multiple sclerosis battler fights for $200,000 treatment Or… Fundraiser for Deanna Or… Burbage dad’s Ā£50,000 appeal to…
October 28, 2016 Columns by Ed Tobias Getting in the Front Door It’s happened to us all. Ā You arrive at a business and discover there are steps at the entrance. A few years ago my wife and I arrived to check-in to a 4-star hotel near The Wheel in London, and discovered that there were a dozen steps at both of…
October 25, 2016 Columns by Ed Tobias Brace Yourself for MS One of the MS blogs that I follow is written by Jen, who lives in England.Ā It’s called Tripping Through Treacle. Doesn’t that neatly sum up the lives of many of us in just three alliterative words?Ā From MS newbies to old-timers like me, we worry (or have worried)…
October 21, 2016 Columns by Ed Tobias MS Drugs – Who’s Using What? Most of us who live with multiple sclerosis also live with a disease modifying therapy (DMT) ā a drug that, we hope, will positively modify the course of our disease. One of the earliest of these was Avonex, a weekly injection into the muscle. I was one of those…
October 18, 2016 Columns by Ed Tobias Are the Benefits Worth the Risks of Lemtrada? My neurologist calls Lemtrada “HSCT lite.” Ā She says that not only is the drug able to reduce exacerbations and limit the overall progression of multiple sclerosis, it’s actually reversed some symptoms in some of her patients. Ā I guess I’m going to find out if she’s right about…
October 12, 2016 News by Ed Tobias MS, Cancer Risk and a Trip to the Dentist. What’s the Connection? I made a trip to the dentist today. What does that have to do with multiple sclerosis, you ask? Stay with me. We’ll get there. But first, let me tell you about a weekend conference that my local chapter of the National Multiple Sclerosis Society held recently. One of…
October 10, 2016 Columns by Ed Tobias MS Patient’s Pick of the Week’s News: Viruses and MS, New Therapy Device, Tysabri vs. Gilenya and More I’m filling in for Ian Franks this week onĀ news item picks forĀ Multiple Sclerosis News Today while Ian is in Moscow taking the first step in his HSCT (hematopoietic stem cell transplantation) quest. We wish him well. Virus Linked to Respiratory Infections May Also Trigger Brain Diseases…
October 6, 2016 Columns by Ed Tobias MS, Osteoporosis and Men – What a Guy Needs to Know Osteoporosis (fragile bones) is only a women’s problem, right? Wrong, especially if you have multiple sclerosis ā as I’ve discovered. Osteoporosis causes bones to become weak and brittle.Ā A fall that probably wouldn’t harm a healthy person can easily break the bone of someone with osteoporosis.Ā When the…
October 4, 2016 Columns by Ed Tobias Pilates: A Good Therapy for MS? Have you tried Pilates to improve your mobility?Ā When my wife and I tried it, a few years ago, I thought that it was sort of like doing yoga stretches using exercise equipment.Ā It felt good and, for the short time that I did keep it up, Pilates seemed…
September 29, 2016 Columns by Ed Tobias Is Your Drug Plan the Best One for You? It’s that time of the year. Drug insurance companies in the U.S. are making changes to their formularies — the list of drugs that your insurance company will pay for. Those formularies change from year to year so you need to be alert to changes that may impact your…
September 26, 2016 Columns by Ed Tobias Packed House at FDA Stem Cell Hearing – Public Can Comment Through Tuesday What should be done about stem cell treatments? Are stem cells safe? Do they work? Do stem cell clinics need more regulation, or less? With some studies reporting encouraging results from using stem cells to treat a number of diseases, including multiple sclerosis, the number of clinics around…
September 22, 2016 Columns by Ed Tobias Growing Old with MS I hate to admit it, but I’m getting kind of old. That’s not to say that 68 is really old, but I’m probably older than a lot of you who are reading this. I’m also 36 years old in “MS years.” I was diagnosed the month that Ronald Reagan…
September 20, 2016 Columns by Ed Tobias Laugh with TV Ads that “Get” Disabilities You don’t see people with disabilities very often in television ads.Ā And when you do, the person with the handicap is usually playing a secondary role or the ad uses the disabled person for an emotional appeal.Ā It’s not real-life.Ā It’s not us. So, a tip of my hat to…
September 15, 2016 Columns by Ed Tobias MS and the Shingles Vaccine: Can They Go Together? A post on another website, asking about whether it was wise for someone with Multiple Sclerosis to receive the shingles vaccine, caught my attention the other day. “Have any of you had the Shingles vaccine? I’m still debating about it. I’m concerned about insulting my immune system…
September 13, 2016 Columns by Ed Tobias 7 Marathons on 7 Continents for MS Runner Tripping, falling and bloody knees. Been there. Done that. (Who with MS hasn’t)? But this wasn’t me. This was Cheryl Hile and it was happening to her as she was running a half marathon in Carlsbad, California. Cheryl had been running marathons for half a dozen years when, in…
September 8, 2016 Columns by Ed Tobias Have a Say About MS Drugs Anyone with a chronic medical problem knows how expensive drugs can be, and how a drug that you need can be here today ā¦ gone tomorrow on the list of drugs that your health plan will pay for. You also know that cost and insurance coverage aren’t the only…