News, info and tips for living with multiple sclerosis
I’ve had my shots, so I’m protected,” a friend recently told me, referring to his COVID-19 shot. My wife and I also have received a COVID shot. More than a month has passed since our second shot of the Moderna vaccine, so we’re also protected — theoretically. But theory doesn’t always match reality, and I’ve been searching for a way to explain to people why we still wear our masks,…Continue Reading
The journal JAMA Neurology recently reported that a 78-year-old man with progressive multiple sclerosis died after being diagnosed with the brain disease progressive multifocal leukoencephalopathy (PML). The man, diagnosed with MS about 30 years ago, had been treated for two years with Ocrevus (ocrelizumab), and had no previous immunotherapy. As of last December, 10 cases of PML had been reported in people being treated with Ocrevus since the U.S. Food…Continue Reading
Lately, I’ve seen a lot of incorrect information on social media about how multiple sclerosis affects our immune system. Some of it seems to be generated by concerns that MS makes someone more susceptible to COVID-19, or confusion about whether people with MS can safely receive a COVID-19 vaccine. Here are a couple examples: Immunosuppressed or immunocompromised? One person with MS wrote online that he is “immunosuppressed.” But MS does…Continue Reading
It’s been nearly two weeks since my wife and I were back in Bowie, Maryland, for our second shot of the Moderna COVID-19 vaccine. It was a sunny and warm afternoon after a windy, cold, and wet month. We hoped that was a good omen. Nina, the same pharmacist who gave us our first shots exactly four weeks earlier, was there again, and our jabs went smoothly. Laura and I…Continue Reading
Ooooops!” Actually, I spit out a shorter, one-syllable word as I took a stupid, scary tumble…one of the worst I’ve had in 40 years of living with MS. But this is a family column. My last scary tumble, a few years ago, happened from a sitting position, and I fell onto the carpet. This one happened while I was standing, and I tumbled onto the concrete floor of the parking…Continue Reading
This is disturbing and, unfortunately, not surprising. More than 50% of people with advanced multiple sclerosis report they’ve been mistreated by a family member or friend who cares for them, according to the results of a survey by researchers at the University of California, Riverside. Much of that mistreatment (44.2%) is described as psychological, often involving being insulted or sworn at in anger. This doesn’t surprise me, because I often…Continue Reading
If you’re having trouble paying for your MS drugs, you’re not alone. I regularly see social media posts from people whose insurance has changed or whose insurance company has suddenly dropped a medication from its formulary (the list of medications it will pay for). Or, it has decided that you must change from a brand name drug to a generic one. Sometimes the problem is that the person with MS…Continue Reading
It’s a good thing my wife, Laura, is persistent. Thanks to her tenacity, we’ve both been able to get our first shots of the Moderna COVID-19 vaccine. According to the pharmacist who gave us our shot #1, in two weeks we should be about 60% protected from the SARS-CoV-2 virus that causes COVID-19. After our second shot, given 28 days after the first, clinical trials report the efficacy jumps to…Continue Reading
My left hand was numb and weak when I was first diagnosed with multiple sclerosis. For years after that, symptoms above my waist seemed just as prevalent as those below it. Yet, there were no tests being used that measured my waist-up disability level — nothing equivalent to the Expanded Disability Severity Scale (EDSS) that neurologists have used for decades to measure the level of disability of people with MS.…Continue Reading
A medical website’s headline screamed, “Breakthrough Multiple Sclerosis Vaccine Shows Impressive Results In Study.” The New York Daily News joined in, highlighting a potential “breakthrough” vaccine. Other media outlets also were using similar adjectives last month. Unfortunately, it’s a little too hype-ish for me. I suspect some of it was was generated because the company sponsoring the research is BioNTech, which helped to develop one of the COVID-19 vaccines. Now, the…Continue Reading