The MS Wire

News, info and tips for living with multiple sclerosis

Category: Living with MS

Worrying About MS Treatment Side-effects?

MS treatment

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

You’ve Gotta Go but There’s No Bathroom in Sight

Public loo

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

I’m Too Tired to Write Tonight

Head on keyboard

OLYMPUS DIGITAL CAMERA

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

Flyers With a Disability May Get A Break if These Changes are Adopted

Airport terminal

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

Can You Give Me a Lift to The Doctor?

Driving to the doctor

Is getting from home to the doctor a pain in the butt for you? Do you have to search for someone to take you? Do you haul yourself into your car and hope that you can find a nearby parking spot? Is public transportation impossible to find where you live? It’s such a hassle that as many as 30 percent of patients may be skipping their medical appointments due to…Continue Reading

Serious Medications Need Serious Care Coordination

Ocrevus (ocrelizumab) is a serious disease-modifying therapy. It has the potential to deliver a major blow to a patient’s multiple sclerosis, but it also carries the possibility of severe side effects. The protocol for Ocrevus requires different doses on different infusion dates, following a specific treatment schedule. It’s also very expensive. This all shouts for the need for serious care coordination! Jamie’s care coordination problems I was concerned when Jamie, who…Continue Reading

A Dating App for People with Chronic Illness

Lemonade logo

Does your illness limit your ability to find a date? (Courtesy of Lemonayde) Dating isn’t a concern of mine, since I turned 70 earlier this month and have been happily married for 42 years. But, on the MS social media sites that I follow, younger, single folks regularly post concerns about starting relationships. Now there’s a dating app that might help make that social connection easier. It’s called Lemonayde. The dating…Continue Reading

Man or Woman Doctor? Which is Better?

The neurologist who treats my MS is a woman. So is my primary care physician. I wouldn’t have it any other way, and an article in The New York Times makes me feel my decision is the right one. Patient studies tell the tale The Times article points to a recent study of more than half a million patients admitted to emergency rooms for heart problems over a two-decade period…Continue Reading