Living with MS

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…

People in Texas with multiple sclerosis (MS) and other medical conditions now have access to cannabis-infused lozenges, Surterra Texas announced. Under a Texas Compassionate Use Program, cannabis-containing therapies may be prescribed to help treat various neurological and other disorders, including terminal cancer, spasticity,…

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”…

More than 2.8 million people worldwide are now estimated to be living with multiple sclerosis (MS), including about 1 million in the United States, an update to the Atlas of MS reports. An increase since its previous update, this number translates to someone, somewhere in the world, being newly diagnosed with…

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…

The National Multiple Sclerosis Society, together with the Lewin Group, has launched a survey to assess the economic impact multiple sclerosis (MS) has on patients and their families. In the survey, which can be found here, MS patients and/or their family members are asked to answer…

Cognitive problems can persist into adulthood in people whose multiple sclerosis (MS) began in childhood or adolescence, and are linked to neurological issues and delays in treatment initiation, a study reports. Early use of disease-modifying therapies (DMTs) and of approaches designed to preserve cognition should be encouraged for pediatric…

Many people with multiple sclerosis (MS) struggle with intestinal issues. There is evidence of the link between gut health and MS.  Bloating is a common result of these issues. It’s super annoying and…

There’s always something! As a columnist, that comes in handy, as then I don’t have to think too much. Stop snickering at the back for thinking that I never think. How very dare you? If any of my fellow Brits are reading this, yes, I’m liberally nicking comedy catchphrases. Why…

Labor Day has come and gone here in the U.S. Now, flu season has arrived in the Northern Hemisphere. This isn’t the novel coronavirus we’ve been fighting all year. It’s the regular seasonal flu virus that’s knocking on our door again. Each year, some people with multiple…

I am tired of having multiple sclerosis. I am just so tired of this disease. And you know what? That is OK. Being tired of MS does not negate my gratitude. It does not replace my joy and zest for life. It is granting myself the grace to be honest…

I don’t know about you, but these last few months have been rough. Like, I-want-to-crawl-under-my-weighted-blanket-with-a-hot-water-bottle-clutched-to-my-midsection-and-listen-to-Chopin’s-“Nocturnes”-on-an-endless-loop rough. Life’s just like that sometimes, especially when you have multiple sclerosis. Ever since the pandemic started, things have only gotten more challenging. Now, we have the added stress of illness, working from home (if…

Multiple sclerosis (MS) patients who interact with different sources of health information are more likely to adopt and maintain healthy lifestyle behaviors, a study has found. A combination of in-person interactive educational workshops and practical tools to implement these concepts in daily life may be the best strategy to…

Migraine occurs in one third of people with multiple sclerosis (MS) and is more common among American and African patients, according to a review study. The data support previous findings suggesting this debilitating condition is more common in MS patients than in the general population. Further research is…

After I received my diagnosis of multiple sclerosis, my nurse handed me a leaflet explaining how to tell those at my workplace I’m “DISabled,” and what that means, and another leaflet explaining how to claim DISability benefits. The thing is,…

In June, I wrote a column about accepting I’d have to physically retire from directing and producing my own stand-up stage show, “The Edge.” Now, because of that which cannot be named, the show is also being retired just short of its 30-year anniversary! Our very first…

The number of new cases of multiple sclerosis (MS) possibly due to obesity in childhood and adolescence could rise by  14% in the U.S. over the next 15 years, and by 10% in the U.K., a study reported. While the worldwide risk of MS linked to obesity in early life…

I don’t know about you, but most mornings my brain feels like it’s full of hyperactive gerbils. This could be my multiple sclerosis, or it could be pandemic brain fog. Either way, I understand that song by The Police in a brand new (and very real) way these…

I grew up sailing the San Francisco Bay. My summers were spent in sailing school. My father’s daughter, I loved being on the water. There was no place more peaceful or exhilarating. That serenity turned to turbulence one cold and foggy day. While speeding downwind, our boat broached. The…

“What was the date of your last relapse?” the neurologist asked while peering over her glasses at me.  I stared back blankly and then shrugged with a sheepish smile. I knew the year but couldn’t remember the exact date because it was seven years ago!…

The degree to which people with multiple sclerosis (MS) are conscientious — a personality trait that reflects responsibility, organization, and goal-oriented skills — in their work habits can help to predict their employment status in three years, according to a survey of 70 MS patients. A study based on…

Urinary tract infections are a common cause of hospitalization among people with multiple sclerosis (MS), especially older patients with progressive disease, and more attention should be given to their bladder, catheter, and general physical care, a U.K. study reported. These infections are often linked to an emergency hospital admission, and…

Almost two-thirds of people newly diagnosed with multiple sclerosis (MS) in the United States, identified through a national database, were not prescribed disease-modifying therapies (DMTs) over an average of more than two years of follow-up, a real-world study of nearly 5,700 patients found. Current guidelines “recommend early treatment with…

About 20%, or 1 in 5, multiple sclerosis (MS) patients fail to adhere to oral disease-modifying therapies (DMTs) taken each day, and about 1 in 4 stop using a prescribed daily oral treatment within one year, a study based on reported real-world use found. The study “Real-world adherence to,…

Every few days, I go out to our Little Free Library and change the messages on the two side walls, which are covered in chalkboard paint. One of my missives reads: “My ‘summer body’ plans didn’t work out, but I’m killing my reading list. Take that, 2020!” And it’s…

Multiple sclerosis (MS) patients have a greater risk of infections, particularly urinary and kidney infections, around the time of their diagnosis, compared with individuals without MS, a large Swedish population-based study found. Rates of serious and non-serious infections, as well as infections caused by bacteria, virus, and fungus, also…

Donepezil — an approved treatment for Alzheimer’s disease — eased cognitive impairment, depression, and improved other quality-of-life measures in multiple sclerosis (MS) patients with mild to moderate disability, according to results of a single-site clinical trial. The study, “Effect of Donepezil on Cognitive Impairment, Quality of Life, and Depression…

Drinking coffee each day appears to help people with multiple sclerosis (MS) and milder disability and fatigue, with this patient group reporting in a questionnaire that caffeine allowed them to better concentrate on tasks and broaden their attention spans, a study reports. Its researchers suggest that “for selected patients” regular coffee…