News, info and tips for living with multiple sclerosis
It’s happened to me and, if you fly with a scooter or a wheelchair, I bet it’s happened to you, too: a busted or missing set of wheels on arrival. On a flight from Washington, D.C., to Venice, my scooter went to Copenhagen. On a flight from Baltimore to St. Kitts, I was happy to see my scooter appear at the cabin door. But where was the back of its…Continue Reading
There are more than a dozen disease-modifying therapies available for treating MS. Some are shots, some are infusions, and some are pills. Some are more effective than others. The marketing intelligence company Spherix Global Insights regularly surveys which of these treatments are being used by neurologists and what’s influencing their selection. Here’s what the latest Spherix quarterly survey shows about what’s being prescribed. Just over half of the 100 neurologists…Continue Reading
Patients want to be more involved in their healthcare, but it’s not an easy process. I’ve written before about the hurdles we have to overcome to get some healthcare providers to communicate with us, to listen to what we have to say about our medical problems, and even to return our phone calls. The problems extend from the top down to the receptionist and other non-medical office staff. A group…Continue Reading
Over the past few of weeks, warnings have been issued about side effects of two MS treatments. First, the U.S. Food and Drug Administration warned about a “slight” risk of seriously worsening MS symptoms if someone who is using the disease-modifying therapy Gilenya (fingolimod) stops using it. The FDA’s alert said the worsening symptoms could “result in permanent disability,” but the alert failed to provide details about how rare these…Continue Reading
I’ve just passed the second anniversary of my Lemtrada (alemtuzumab) treatment. My first infusion round was the first week of December 2016. Round 2, delayed by four months, was done last April. So, it’s time to update my Lemtrada journey for you. Lemtrada, in case you’re not familiar with this treatment, has been described by some as “HSCT lite.” The medication kills specific B- and T-cells that are thought to play…Continue Reading
We’ve all been there. That “uh-oh” feeling hits and you know you’ll be in trouble if you can’t find a public bathroom, fast. You hope the clerk in the store with the “Bathrooms for Customers Only” sign will make an exception if you tell her it’s about to run down your leg. There’s got to be a better way than that. And maybe there is. (Screenshot from the “Just Can’t…Continue Reading
MS medications are expensive in the United States. We all know that. We also know that less expensive meds can be found in places like Canada and Mexico. So, here’s a novel idea from the nonprofit health insurance provider PEHP, which covers state workers and their families in Utah: Pay those patients to buy their expensive meds south of the border. As Erin Alberty reports in The Salt Lake Tribune, the…Continue Reading
“Deceptive” and “false” are two words used by the U.S. Federal Trade Commission (FTC) to describe marketing claims by two stem cell treatment clinics in California. According to an FTC complaint, the clinics had been advertising that they were using amniotic stem cell therapy to successfully treat serious diseases, including multiple sclerosis, autism, stroke, and heart attacks. The claims included one advertisement saying their treatment restored sight for a 101-year-old woman who had been…Continue Reading
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I’m too tired to write tonight. I wrote that several weeks ago after my wife had back surgery. I’d been doing a couple of things that I haven’t done much in the 42 years since our wedding: shopping and cooking. (Well, making Harris Teeter ready-to-heat meals, that is. For me, that’s cooking. So, I was too tired to write that night. On top of this, I’d been wrestling all day…Continue Reading
Flying isn’t what it used to be, as everyone who’s taken a flight in the past 15 years or so knows. Flyers with a disability can have a particularly challenging time dealing with airports, airlines, and aircraft. Airports are crowded and stretch forever. Airplanes are crowded, their seats are small, and bulkhead seats are hard to nab. If you’re traveling with a scooter or a wheelchair, you look out the…Continue Reading