Living with MS

Tecfidera (dimethyl fumarate) and Gilenya (fingolimod) are equally effective in treating multiple sclerosis (MS), but Tecfidera shows higher rates of discontinuation, according to a real-world study. The study, “Discontinuation and comparative effectiveness of dimethyl fumarate and fingolimod in 2 centers,” was published in the journal Neurology Clinical…

Researchers at Duke University are recruiting adults with multiple sclerosis (MS) for a study evaluating whether the use of a smartphone app that collects data can help capture the disease experience, improve communication with clinicians, and further an understanding of MS. The disease’s complex and varied symptoms means each patient…

Physical exercise fights fatigue and depression in patients with multiple sclerosis (MS), a new study reveals. Remarkably, these positive outcomes in psychological health can be achieved without significant alterations in the patient’s body weight or body mass index (BMI), further supporting the idea that exercise could be…

I knew I had MS nine years ago when I went back to see my neurologist. I’d had the lumbar puncture to prove it definitively, and I displayed all the requisite symptoms. The only question I had was, “Will this lead to me being in a wheelchair?” The…

Aug. 1 was a busy day around our house. Backpacks needed to be loaded up, breakfasts consumed, pictures taken, and shoes tied tightly before the bus arrived. Yes, it was the first day of school. (I could talk about how ridiculous it is for kids to be going back to…

I get my medications the old-fashioned way. When I need to fill a prescription, I either go to the drug store or use a mail-order pharmacy — and usually, I have a copay. Sometimes the copay is just a few dollars, but sometimes it can be a few hundred.

I can describe myself with a myriad of words: kind, funny, smart, quirky, and stubborn, to name a few. So many words are descriptive of my persona; I almost felt safety among them. Almost. I have always preferred paved road to dirt; my place was to shine the already…

Ohio, my home state, is wrestling with the nuances of medical marijuana laws that become effective on Sept. 8, 2018. My husband’s work email had an important notice from the Bureau of Worker’s Compensation (BWC) about this pending change, and as I read it, I thought that nothing really…

People with multiple sclerosis (MS) value exercise and physical activity far beyond the concept of “staying fit,” and consider exercise essential to maintaining a reasonable level of independence and being able to engage in social activities, a small U.K. study based on interviews reports.  The study, “…

When I was younger, I never thought about trying holistic therapies to aid healing. Looking back I wish the medical community had embraced these therapies as potential treatments for MS symptoms. My first few years of living with MS were an incredible struggle; there were…

Dysphagia, or problems with swallowing, is common in patients with multiple sclerosis and significantly reduces their quality of life, according to a new Australian study. Symptoms such as coughing and choking, and mental health issues related to eating or drinking, are common in this patient population, the data show.

The neurologist who treats my MS is a woman. So is my primary care physician. I wouldn’t have it any other way, and an article in The New York Times makes me feel my decision is the right one. Patient studies tell the tale The Times article points…

Everything takes so much damn time! I’m strangely working — or at least doing things I purport as work, such as this column. That’s no different than before MS; I still have the inclination to prevaricate or find something inconsequential to ruminate over, like the state of the Turkish…

Over the past week, I’ve come across two short films that are designed to show what it’s like living with MS. But they have two very different approaches. Interested in MS research? Sign up…

Most patients with multiple sclerosis (MS) are satisfied with the conditions of their intravenous therapy (administered directly into the bloodstream) and are very aware of the therapy’s safety, according to a small Macedonian study. Also, establishing a specialized infusion center would substantially increase intravenous treatment satisfaction and adherence. The study, “…

Last week, my husband and I attended an outdoor concert in a small venue that we used to regularly attend just a few years ago, before my MS affected my mobility. Our last concert there was two years ago, and although I was skeptical about going, the weather was perfect, and…

The journey of chronic illness has taught me that our families are greatly affected by our illnesses. Spouses, parents, siblings, and many others can attest to their personal stories of loving someone who is chronically ill. My inspiration for this week’s column was a discussion I recently had with…

I’ve been away for about a week, the first break of that length that I’ve had from writing about MS in about two years. Much of that time was spent on a trip from Long Island, New York, to Newport, Rhode Island, aboard the Mariner. Marine chart of…

Multiple sclerosis (MS) consists of more than lesions; it also comprises silent inflammation. Lesions seem to get all the attention, as they are photographed and flashy, and the main topic in MS circles. But silent inflammation is what is running the havoc behind the scenes. The MS Society…

Hair Loss Seen in RRMS Patients Using Aubagio Often Temporary and Mild, Study Says I read a lot of questions on multiple sclerosis (MS) social media groups from people who are worried about hair loss caused by their disease-modifying therapy (DMT). Aubagio (teriflunomide) is one DMT with…

I’ve been thinking a lot about privilege in recent months — what it enables as well as what it prevents. Those who benefit from it may not be aware of their position, and when their privilege is pointed out, they have a hard truth to face. Many refuse to…

Well, this is going to be a niche market: A picture of a toilet should grab the attention of any plumber who’s now got MS and reads Multiple Sclerosis News Today. Victories need to be celebrated no matter how small the Venn diagram is! The toilet looks OK.

I knew it was going to be one of those days as soon as I opened my eyes. I woke in some sort of half-start, my eyelids popping abruptly open as I looked up at the ceiling. Something seemed…

Have you ever asked yourself, “What am I supposed to do with my life?” or, “How did I get here?” I have asked these questions several times throughout my existence. Those questions regurgitated at the occurrence of every life-altering event. I did not receive a definitive answer that appeased…

  Living with multiple sclerosis (MS) could be compared to having an annoying house guest who never leaves. You can tolerate them at first, but soon your nerves and resilience wear thin. You try to accept and adapt to the house guest, but you never give up on trying to…

Most weeks with MS are downbeat. That’s hardly a way to capture a reader’s attention — all of us struggle. What we need is light to blow away the shade. Last night as I climbed the stairs to bed, my legs gave out with three stairs to go. Luckily,…

As I pulled into the overcrowded Trader Joe’s parking lot, I was grateful to see an open handicapped space. Once parked, I turned off the car engine and paused; the heat was oppressive. Ten days post-chemo/Solu-Medrol (methylprednisolone) and my fatigue was as thick as the stagnant humidity. I…

Loss of health-related quality of life is caused mostly by balance problems, muscle stiffness, and depression in people with relapsing-remitting multiple sclerosis (RRMS), and for those with progressive MS, the causes are muscle rigidity, paralysis, weakness, and pain, according to a…

Last week, I wrote about climbing through grief. This week, I will focus on what I learned in the throes of the cycle of grief. Several people share the opinion that I do too much. My cousin often says that he wants me to say no to…

Leaving a restaurant the other evening, I was stepping off an unusually high curb. Right cane down, left cane down, swing the right leg, swing the left leg, and … uh-oh. Down I go. I’d been asking for it. I’d needed to change the electrodes on the Bioness…