News, info and tips for living with multiple sclerosis
I’m back in Maryland after driving up from Florida. The drive is a little over 1,000 miles and usually takes 16 to 18 hours, which I spread over 2 days. This year, that second day was filled with rain and 18-wheelers – a tough, tiring drive, requiring good concentration and driving skills. I’ve made that drive twice a year for the past 6, even though I’ve lived with multiple sclerosis…Continue Reading
I recently saw a request for clinical trial volunteers for a medication that might reduce my multiple sclerosis fatigue. “That’s great,” I thought. Fatigue is one of my worst MS symptoms. I’ve lived with it for decades and the Provigil (modafinil) that I’ve been using doesn’t help much anymore. This trial seemed like a natural for me. But I didn’t have to read the participant requirements very far to reach…Continue Reading
Have you fallen recently? I’ll bet you have A web-based survey of 965 adults with multiple sclerosis, published in the March 2024 issue of the American Journal of Physical Medicine and Rehabilitation, reports 56% said they had fallen in the previous 6 months. Sixty-eight percent of those falls were in their home. A third of the people were hurt. I’m surprised the numbers aren’t higher. Those falls were the result…Continue Reading
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
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
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
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
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 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 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