News, info and tips for living with multiple sclerosis

Health equality should include disability

Equality symbol

You’d think that people with multiple sclerosis or another disability would have easy access to healthcare services. That’s not always so. A small study in the journal Health Affairs that I wrote about last year said many physicians “expressed explicit bias toward people with disabilities and described strategies for discharging them from their practices.” Now, at the urging of people with disabilities and others, the U.S. National Institutes of Health has…Continue Reading

It’s vaccine time for me, times three

Three vaccines in syringes

My wife and I got the latest COVID-19 vaccine the other day, the first of three vaccines we’ll be getting this fall. The others are the seasonal flu vaccine and the respiratory syncytial virus (RSV) vaccine. This was my sixth COVID-19 vaccination, and I’ve received a flu shot every year for decades. They’ve never been a problem for my multiple sclerosis. The RSV vaccine has only recently been approved by…Continue Reading

A good MS neurologist can be hard to find

Searching for a great MS neurologist

A question that’s been bothering me lately is this: It seems that more than a few neurologists have a less than optimal understanding of multiple sclerosis. Why is that?  In my four decades of living with MS, and during the several years I’ve written about my illness, I’ve regularly heard complaints from people with MS that the neurologist they’re seeing just doesn’t seem to have the right stuff. A Reddit…Continue Reading

Lightening, stress and my MS

Lightening, stress and my ms

Lightning struck at 3 a.m. the other night. The alarm system in my apartment blared — beeep, beeep, beeep — for hours. The dog was barking, the cat was zooming, and I wasn’t sleeping. My stress meter was off the scale. We know that stress can trigger MS symptoms, yet it rarely, if ever, has directly triggered mine. I spent over 40 years in the news media covering breaking news.…Continue Reading

Do animal studies raise our MS treatment hopes too high?

Man with fingers crossed

Mice exaggerate and monkeys lie, some researchers jokingly say. (Or is it the other way around?) Testing on rodents and animals is a typical early step in creating medications, and several multiple sclerosis news sites publish articles about these studies. It’s interesting to read what researchers are studying and the experimental MS treatments they hope will work, especially when it comes to the holy grail of MS treatments which, in…Continue Reading

Will Tyruko save MS patients money? Maybe.

money

The late August approval of Tyruko (natalizumab-sztn) by the U.S. Food and Drug Administration is big news in the multiple sclerosis world. Tyruko is a biosimilar for Tysabri (natalizumab), and it’s the first biosimilar to gain FDA approval as an MS disease-modifying therapy (DMT). “Tyruko has the potential to extend the reach of natalizumab treatment for [MS] patients, increase healthcare savings and fuel innovation through competition in the market,” Keren…Continue Reading

Caverns, grandkids, my scooter and me. Does trouble lurk?

Luray caverns

My wife, Laura, thought it would be fun to take our grandkids, ages 7 and 9, to spend a few hours exploring a giant cave. I wasn’t so sure. Ten minutes into the excursion, I was wondering which one of the adults would be hauled out in an ambulance. Luray Caverns in Virginia bills itself as the largest caverns in the eastern United States. The pictures of stalactites and stalagmites…Continue Reading

Is your MS able to deal with disaster?

Disaster symbols

I’m sure you’ve seen the pictures of the wildfires that charred Maui, Hawaii. As I write this, more than ten days after the blaze, at least 111 people are known to have been killed. Some neighborhoods are gone. People literally ran from the flames. This past weekend thousands of people were fleeing a wildfire in Yellowstone, the capitol of Canada’s Northwest Territories. But my multiple sclerosis makes running impossible, and…Continue Reading

MS pain can be ubiquitous

Aaargh pain graphic

Multiple sclerosis is a pain in my butt — and other places, too. It hasn’t always been that way. For many years post-diagnosis, I didn’t notice much pain. But of the 43 years I’ve lived with MS, it’s hurt for the past 15. Usually, it’s just a dull ache in my lower back. I can also have a similar pain in my hips and butt. Once in a while, I…Continue Reading

A Big Birthday and Another MS Anniversary

birthday cake

“Will you still need me, will you still feed me, when I’m 64?” Could Paul McCartney have imagined what life would be like at 64 when he wrote that iconic lyric as a teenager, or when the Beatles recorded it in their early 20s? I never could’ve imagined it when I was a teen, or even when I was 40. Later this week I’ll be 75, more than a decade…Continue Reading