Columns

Majority of MS Patients in US Report Mistreatment by Caregivers in Survey This is a serious issue, but it’s not as pervasive as this headline makes it appear. The survey looked only at the treatment of people with advanced MS, the 30% of people with MS who need help…

A few weeks back, I listened to a segment on NPR’s “Here & Now” featuring superstar pianist Lang Lang and his latest recording project. I’m still thinking about it. He decided to tackle Johann Sebastian Bach’s masterwork, “Goldberg Variations.” No mean feat, seeing as how there are 30 variations…

When did I first become aware of the word “phage”? “Star Trek,” of course! It was an episode about a disease that was destroying a race somewhere in the Delta Quadrant. (OK, possibly — even I fade out in the Nerdverse. But it definitely was in the “Voyager” series.)…

Editor’s note: Previously, this piece stated that Dr. Ide Smets theorized a transition to telemedicine as the standard of care could cause decreased life expectancy in the U.K. of up to 30 years. The piece has been corrected to state that such a change could result in a decreased life…

The cog fog (cognitive fog) is thick and heavy. I cannot seem to extract words from the alphabet soup that fills my head. This is torturous for a self-described word nerd. And as my MS progresses, so does the fog. Slowed cognition has become one of the most…

Finding an understanding community makes such a difference to people diagnosed with multiple sclerosis (MS).  Our partners, families, children, and friends do their best to listen and empathize, but at the end of the day, they can only empathize so much. Unless they have an illness…

Mayzent Approved for Active SPMS Patients in England and Wales This is great news for people with MS in England and Wales. Mayzent (siponimod) is a needed weapon in the MS battle. It is approved for use in active cases of secondary progressive MS (SPMS), while most other disease-modifying…

Despite the melatonin and Kava tea, the hot baths and weighted blanket, I’m not sleeping very well these days. I haven’t been for months actually. In addition to the “low-burn” stresses that come with adulthood and the utterly average cares of the workaday world, I have felt a…

OK, you’re not all science fiction nuts, so I’ll explain: The Borg are a cybernetic race and the lead baddies in the “Star Trek” universe — or, the way the latest Netflix iteration is going, the multiverse. Besides trying to take over all life forms, they also have the sneaky…

My multiple sclerosis (MS) was diagnosed 40 years ago in August. I never kept my MS a secret, but I didn’t go around advertising it, either. I’ll bet, for the first 20 years or so, very few people at work knew I lived with the disease. When my MS stuck,…

When I was first diagnosed with MS, I didn’t have a choice about what disease-modifying therapy (DMT) I could take. My neurologist held up his hand and pointed one by one to each finger, with each…

Gilenya and Tecfidera Similarly Effective at Treating RRMS, Real-world Study Says Gilenya and Tecfidera are both oral disease-modifying therapies. Both meds attempt to limit the inflammatory action of the immune system. Both now have generic versions. And as this story reports, neither appears to have a leg up over…

It was 3 p.m. last Thursday. Things should have been good. I had filed the copy for my previous column the day before. Ultimately, some of my outrageous musings had gone, and some I considered even worse had stayed. It’s an age-old journalism, radio, and TV writer’s trick: If…

Many people with multiple sclerosis (MS) get tattoos. Often it’s a way to deliver a statement about MS to the world, or perhaps it’s a personal message to the person sporting it. But a new report cautions that too much ink might create a health issue for some folks.

A multiple sclerosis diagnosis is hard to process. Our body that we once knew so well suddenly feels untrustworthy. The truth is that the malfunctioning of our body is a traumatic event. We never expected it to do these things.  We are…

MS Patients Should Avoid ‘Silver’ Tooth Fillings Due to Mercury, FDA Advises Concerns about the possible danger of amalgam dental fillings have been floated for years. Several European countries already have banned their use in certain cases. Now, regulators in the U.S. have taken a small step in that…

Multiple sclerosis has taught me many lessons over the last 16 years, and one of the most lasting ones has been about finding balance. I can’t run like a madwoman from one task to the next and not expect consequences. There has to be a balance between work and rest.

Eurgh! Poo is what I fear most at the moment. I thought turning this column into a diary was cool. Following the greats, such as John Diamond, who chronicled his cancer to the end, takes me into some strange quarters. In this case, strained ones! Multiple sclerosis (MS) affects egestion,…

For years, some people have warned of a possible connection between multiple sclerosis (MS) and the amalgam fillings many of us have in our teeth. The concern has been that these fillings contain mercury, which can be toxic, especially if they are removed. In large part, these concerns have…

I am often so preoccupied with the daily maintenance of MS that I forget where the disease ends and I begin. It is too easy to lose our identity among the myriad challenges that accompany a chronic disease. I am the queen of juggling chaos, but that often leaves…

“I’m just lazy,” I told myself. “Why can’t I do the things I need to do? I’m so exhausted and in pain all the time, I just want to sleep. Are my MS symptoms getting worse?” My body was driving…

MS Prevalence at Over 2.8 Million Worldwide, Update to Atlas Reports With almost 3 million of us around the world, we’re not really rare, but we’re rare enough that our MS is still a puzzle to many. People seem to know what muscular dystrophy is (probably because of the…

It’s usually best to write with time for reflection. I often feel like a foreign correspondent reporting from the front line of my own bedroom! The shells of multiple sclerosis (MS) explode within me, and I’m suddenly airlifted into new territory. It’s like being yanked from the street troubles in…

We’re moving and I’m stressed. That’s redundant, I know, as moving is simply stress on wheels — which isn’t good for someone with MS. Studies have shown a link between stressful life events and MS exacerbations, known as flares. Researchers, if you’re reading this, please keep a watch on…

Last week, I again started my twice-annual infusion of Rituxan (rituximab). After 384 days without my disease-modifying therapy, my team decided I could no longer wait. In its absence, my symptomology had worsened. Halting progression trumped a pandemic, and with personal protective equipment in place, I begin…

Multiple sclerosis is an unpredictable disease that can fluctuate at any time. It’s difficult to predict something that behaves so unexpectedly, but one thing you can do to feel in control is track your symptoms. Because brain fog and…

National MS Society Launches Survey to Assess Economic Impact of MS We know that managing MS is expensive. It can cost us money out of our pockets and also limit our ability to earn that money. A small survey about this was the subject of my “MS Wire”…

We’re now moving into the sixth month of quarantine, and it’s looking more and more like the world isn’t going to snap back to the way it was before all of this craziness started. I’m starting to think that’s not necessarily a bad thing, because some of the stuff going…

I’ve been a moderator at MS News Today Forums for a while. One of my jobs, besides rejecting the interminable bots that try to become members, is to promote interaction. This is the hard part. The bots are amazingly easy — they are so far away from getting near…

Multiple sclerosis (MS) is expensive. Even with good insurance, those of us living in a country without universal healthcare have significant out-of-pocket costs for our treatments and medications. Some of these costs may not be covered at all. MS can put us into some serious debt, and it happens to…