Diagnosed with MS at age 32 in 1980, Ed has written the "MS Wire" column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.My philosophy about living with MS is written on a plaque hanging on the wall in my home. It reads: “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Olga Bobrovnikova doesn’t dance in the rain. Instead, she plays the piano.
Chemical that Stimulates Estrogen Receptors Seen to Promote Myelin Repair Through ‘Good’ Inflammation in Mouse MS Model Caution: This is only a mouse study. However, anything that might repair the damaged myelin of people with MS catches my eye. In this case, researchers are building on earlier…
MS medications are expensive. Many people with MS are able to afford their high prices only because their insurance covers most of the cost, and what remains as their copay is often covered by many of the pharmaceutical companies that produce those meds. The companies offer patient assistance…
In the United States, the government can do very little to control the costs of our expensive MS medications. In the United Kingdom, it’s a different story. The U.K. has an organization called the National Institute for Health and Care Excellence, better known as NICE. NICE provides healthcare…
Two multiple sclerosis medications that are both popular and expensive are on a new list that U.S. regulators hope will increase price competition. The medications are Ampyra (dalfampridine), made by Acorda, and Tecfidera (dimethyl fumarate), by Biogen. They’re included on a list of more than 50…
National Nurses Week was earlier this month. I’m a little late saying it, but, “Thank 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…
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…
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…
A new survey by the Kaiser Family Foundation finds that healthcare costs in the U.S. are increasing faster than general inflation. As 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…
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…
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…
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…
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. The company…
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…
#AAN2018 – Stem Cell Transplant is Effective Treatment for ‘Aggressive’ 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 the Expanded Disability Status Scale (EDSS) levels…
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…
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 exists between the Epstein-Barr virus (EBV) and multiple sclerosis. But scientists have had…
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,…
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…
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.
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…
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…
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,…
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…
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…
For years, my wife and I have disagreed about smells. She smells something and I don’t. I tell her that her nose is too sensitive. She tells me to get out the air freshener. Over the 37 years since my MS diagnosis, this conversation has happened thousands of times.
Blood Stem Cell Transplants Improve RRMS Patients’ Disability, Phase 3 Trial Shows Here’s yet another study that shows the benefits of autologous hematopoietic stem cell transplantation, or AHSCT — the procedure in which a patient’s own stem cells are harvested and used to rebuild the…
I got a phone call from my MS One to One nurse, Lynn, today. One to One is the patient support service provided by Sanofi Genzyme for patients on the biotech company’s MS disease-modifying therapies (DMTs) Lemtrada (alemtuzumab) and Aubagio (teriflunomide). Lynn called to ensure that all…
As we all know, the cost of prescription medications can be outrageous. Disease-modifying therapies aside, even with insurance, the medications we get from a pharmacy can take quite a bite out of a budget. Though many people don’t know it, there are times when it can actually be…
New Spherix Report Finds PPMS Treatment Increased Significantly in Past Year Primary progressive MS has, in some eyes, been the stepchild of the disease-modifying therapies. PPMS patients move steadily downhill, and some believe treatments haven’t kept pace with their disease. Now, the research company Spherix has news…
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