The MS Wire

A little more hope for restoring myelin

Finding a treatment that can restore myelin is my holy grail for multiple sclerosis researchers. Will a neurostimulator designed by SetPoint Medical someday be the treatment for which I’ve been searching? MS has been attacking my myelin since I was diagnosed 43 years ago, probably longer, stripping away insulation from axons and disrupting the signals that travel along my nerve fibers. That, in turn, has disrupted my walking, my thinking,…Continue Reading

Do you have an MS story to share?

We all know that multiple sclerosis is a “snowflake” illness – no two cases of MS are exactly alike. Everyone reading this has probably traveled a different MS road – different symptoms, different treatments, different progression, etc. I’d like to hear your stories and include some in a chapter to be added to a second edition of my book “The Multiple Sclerosis Toolbox.” How difficult was it to be diagnosed…Continue Reading

Vitamin D3 for my MS?

I took a relatively high dose of vitamin D3 for years – decades, actually – believing that it might slow my multiple sclerosis progression or improve my symptoms. I think it was my neurologist who suggested the supplement, and it’s not surprising. The Mayo Clinic’s website says vitamin D supplements may reduce the severity and frequency of MS symptoms. The MS Trust warns that having a low lever of the…Continue Reading

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!

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?

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

Travel, stress, and my MS

Travel with my multiple sclerosis can mean super-size stress. But some advance planning can smooth the ride. I’ve always taken pride in my ability to travel the world using my little scooter, but this trip – flying from Florida to Washington, DC and back over the Christmas holidays – worried me. My wife and I hadn’t flown in five or six years and, since our last flight, Laura had begun…Continue Reading

The MS Wire is shifting gears

Posted on December 11, 2023December 11, 2023

As some of you may know, after more than seven years of writing the MS Wire column for MS News Today I am no longer writing for that website. As I admitted in my final column last Friday, “writing a couple of columns almost every week, under a deadline, has taken its toll on my energy, and sometimes on my mood. It’s time to back off a bit.” Much of…Continue Reading

Five things I’m thankful for despite my MS

Posted on November 27, 2023November 24, 2023

It wasn’t a good morning. I was dragging my cement-pillar legs around the kitchen and grew frustrated as I lurched from the refrigerator to the counter to feed the cat and the dog. I’d propped my two canes against the counter, but they’d slid to the floor — not once, but twice. When I bent down to put a bowl of water on the floor, it spilled. Then I wanted…Continue Reading

A better bladder means better sleep

Posted on November 6, 2023November 5, 2023

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

"People newly diagnosed with MS will truly benefit from this book, while those of us who’ve lived with MS for a while will wish we’d had it ourselves!…Neurologists should consider keeping a copy of this book in their waiting room because their patients are going to need it." - Tamara K. Sellman, reviewing for Multiple Sclerosis.net.

The Multiple Sclerosis Toolbox is designed for MS "newbies" but it's great info for everyone. I combine more than 40 years of living with MS with some easy to understand info about diagnosis, treatments, visiting the neuro, relationships, mobility aids, travel and more…a lot of what you get in this blog. A paperback and an e-book are available on Amazon.