The MS Wire - A Column by Ed Tobias

Florida, MS biomarker, Lemtrada, nasal spray

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. Heā€™s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. Heā€™s the author of ā€œWeā€™re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.ā€ Ed and his wife split time between the Washington, D.C. suburbs and Floridaā€™s Gulf Coast.

Two MS Medications Appear on FDA’s Shame List

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 TecfideraĀ (dimethyl fumarate), by Biogen. They’re included on a list of more than 50…

I Have MS and I’m Very Lucky

National Nurses Week was earlier this month. I’m a little late saying it, but, ā€œThank 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…

A Pediatric MS Medication Gets the OK

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…

Healthcare Costs Can Depend on Where You Live

A new survey by the Kaiser Family Foundation finds that healthcare costs in the U.S. are increasing faster than general inflation. AsĀ 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…

MS, Walkers, Wheelchairs, and Guns (Part 2)

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…

Website Shows How Much Money Your Doctor Gets from Big Pharma

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.Ā The company…

Is This a Step Toward Lower Medication Prices?

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…

New DMT Guidelines Are Good for MS Patients

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…

Research Reveals Another Possible Epstein-Barr Virus Link to MS

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 existsĀ between the Epstein-Barr virus (EBV) and multiple sclerosis. But scientists have had…

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.

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,…

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…

Is MS Keeping Me from Smelling the Roses?

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,Ā this conversation has happened thousands of times.

It Shouldn’t Be This Hard to Get Our MS Medications

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…