Columns

I have two regular carers at the moment. The first to arrive greets me with her usual efficacious, “Good morning, John!” She’s loud enough to wake the whole street. Luckily, my neighbors should be up anyway, as my carers are booked for 11 a.m. each weekday. I have mentioned in…

Did you know that there are various types of fatigue, and each makes us feel slightly different than the others? A long while ago, I was at an MS seminar listening to a nurse talk about fatigue. She…

MD1003 Fails to Prevent Disability Progression in Progressive MS Patients, Trial Shows This is discouraging news for people taking high-dose biotin, many who have been buying it over the counter. Not only do these researchers report that taking 100 mg of biotin (MD1003) three times a day failed to…

Last week’s column, “The Loneliness of the Long-distance UTI Patient,” dealt with my dive into the Eastern (bloc) world of bacteriophages. It would be a fun exercise (and boy, do I need some exercise) to dive into the history of the discovery of bacteriophages and antibiotics. Both fight…

Is the United States a step closer to approving a form of stem cell transplantation as a treatment for multiple sclerosis? I believe it may be. That’s because the National Multiple Sclerosis Society (NMSS) has slightly changed its view of autologous hematopoietic stem cell transplantation, or aHSCT. aHSCT involves…

I have been living in the land of Netflix. It went from a place I would visit from time to time to a home away from home. In between life’s moments, I find myself teleported to the land of escape. I become lost amid the complexity of characters and the…

It doesn’t take much for us to feel uncertain. It could be the result of a new symptom or doing something you’ve never before done, such as attending a telehealth appointment. Maybe the election causes you uncertainty. Perhaps current events or new…

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…