News, info and tips for living with multiple sclerosis
My nose started running about a week before the sledgehammer hit. Then came a chesty cough, not yet as serious as the one that had my wife wheezing but I was worried that I’d soon catch up with her. I didn’t usually develop severe upper respiratory problems but as you probably know, for someone with multiple sclerosis, even a little cold can pack a big punch. It soon did. I’d…Continue Reading
As more high-efficacy disease-modifying therapies (DMTs) are being made available, people with multiple sclerosis have to decide how much risk they’re willing to accept in exchange for the treatment’s potential benefits. It’s a tough decision, not made any easier if a patient’s neurologist is unwilling to accept much risk. According to researchers at the University Medical Center Hamburg-Eppendorf in Germany, when it comes to one highly effective DMT, patients are…Continue Reading
I’ve used the Bioness L300, a functional electrical stimulator (FES) device, for about seven years to counter my left foot drop. It’s strapped to my leg just below the knee and, as I began to take a step, it sends a low-intensity electrical pulse down a nerve that triggers my foot to flex upward, so my toes don’t drag. The L300 has worked well for several years. But, as my…Continue Reading
It happened on the coldest day of the season. The wind-chill temperature was 16 degrees F. I was outside, using my electric scooter to take Joey, our cocker spaniel, for his early morning walk. Joey had just finished his business and I was tying the poopie bag when I heard beeping — a string of five beeps — over and over. I checked my iPhone, but it wasn’t the source…Continue Reading
Google has quietly teamed up with Ascension, one of the largest healthcare organizations in the United States, to process the medical records of millions of people. As first reported in The Wall Street Journal, “Project Nightingale” involves all sorts of information about things like lab results, diagnoses, and hospitalization records, and includes patients’ names and birth dates. Ascension runs more than 2,600 hospitals, doctors’ offices, and other healthcare facilities in…Continue Reading
What worries you most about living with multiple sclerosis? I’m catching up with a small survey by Can Do MS, an organization that promotes health and wellness education programs. The survey results, released in September, show that disease progression, financial concerns, and loss of independence are top of mind for people with MS. This comes to me as no surprise. And it means we need health care teamwork. Here are…Continue Reading
It’s time for another update on how I’ve been doing with my Lemtrada journey. The headline is I’m doing well. Lemtrada (alemtuzumab) is a disease-modifying therapy (DMT) delivered in two stages. The first stage entails a series of five daily infusions, while the second stage involves three daily infusions, given a year later. The medication has shown some success in slowing or halting MS disease progression in many, and has…Continue Reading
A question raised by neurologist Gavin Giovannoni on the Barts-MS blog lit up my radar recently. Dr. G asked whether “elderly” people with MS should be treated differently than those who are younger. The question arises because a case of progressive multifocal leukoencephalopathy (PML), a serious brain disease, was recently reported in a 76-year-old MS patient. According to the blog, citing Roche Pharmaceuticals, the man has had MS a long…Continue Reading
Don’t tell me how good I look … even if I do look good. Invisible Disabilities Week took place earlier this month. And, as people with MS know very well, multiple sclerosis can be as invisible as Casper the Ghost. An invisible disability isn’t limited to people with MS, but we have to be close to the top of the list of people who are told they look good when…Continue Reading
If a doctor has ever told you “it’s all in your head” this will resonate with you. A neurologist at the Harvard Medical School named Matthew Burke has written an article titled “It’s All in Your Head” for the well-read Journal of the American Medical Association. According to Dr. Burke, the problem of physicians telling patients that unexplainable symptoms are all in their head has become a silent epidemic, “slowly…Continue Reading