The MS Wire

News, info and tips for living with multiple sclerosis

Category: Living with MS

But doctor, I can’t afford the cost of that MS drug

Picture of empty pockets due to health costs

Have you checked the cost, recently, of MS drugs or of drug insurance premiums?  Reuters, using data compiled by the health care research firm 3 Axis Advisors, has reported that price boosts were expected on more than 140 brands of drugs early this year – more than 500 if you include different doses and formulations. It’s probably not a coincidence that the monthly cost of my AARP Medicare Part D…Continue Reading

MS Awareness Month book special!

The Multiple Sclerosis Toolbox cover

March is MS Awareness Month…what better time for me to drop the price of the paperback version of my book, “The Multiple Sclerosis Toolbox,” to just the cost of printing and shipping. “The Multiple Sclerosis Toolbox” combines my experiences living with MS for four decades with detailed information about treatments, tests, diagnostic criteria, mobility aids, travel, talking with your neurologist, and more. It’s designed for folks who are newly diagnosed…Continue Reading

Is it time to end your MS DMT?

Yes/no sign for DMT age decision

Is there a time when multiple sclerosis (MS) is finished attacking the nervous system – when it just “burns out” and there’s no longer any need to continue using a disease-modifying therapy (DMT)? A 2017 review by researchers at the University of British Columbia notes that disease activity declines as people with MS grow older. It suggests that those who are 55 years or older and have had no relapses,…Continue Reading

A better bladder means better sleep

Bladder incontinence

I slept through the night last night. Recently, I’ve managed to do that on most nights. No 4 a.m. bathroom trips for me! That’s a big deal. There was a time when I’d get up two or even three times during the night for a bladder run. Sleeping seven or eight hours straight is huge. I’ve been troubled by bladder frequency and urgency for many years during the four decades…Continue Reading

My MS does better in the Sunshine State

I’m back in my happy place. My wife, Laura, and I, along with our Yorkie-poo and our Maine Coon cat, have made it back to our Florida home after 16 hours and about 1,000 miles of driving over two days. There were no traffic jams, we had a comfortable motel bed, my multiple sclerosis bladder problems were pretty much under control, and Laura and I didn’t kill each other. So…Continue Reading

Susie uses music to muse over her MS

music notes

“I’m so tiredThe hammer’s coming down againI’m hardwiredAll the signals cross and double backBroken insideThere’s no fixing anythingHow do i explainI’m fighting every day to do the simple things?” The lyrics to “Hammer,” written by Susie Ulrey of the band Pohgoh, probably ring true for most everyone with multiple sclerosis. Ulrey’s story is similar to many of ours. Double-vision three days before her wedding in 2000. A visit to a…Continue Reading

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

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