As more high-efficacy disease-modifying therapies (DMTs) are being made available, people with multiple sclerosis have to decide how much risk they’re willing to accept in exchange for the treatment’s potential benefits. It’s a tough decision not made any easier if a patient’s neurologist is unwilling to accept much risk.
Columns
Life is never how you expect or predict it to be. Things happen today that we couldn’t have anticipated. We have no easy or predefined path to fulfillment, joy, or nirvana. Forget about your navigation as your direction can — and will — change at any moment. My compass spun…
Since my diagnosis in 2012, I have tried to look past the negative aspects of multiple sclerosis and maintain a positive outlook. However, I realize that staying positive is not easy. I’ve even received a comment on a previous column about how the narrative of “focusing on the positive”…
MetP Pharma Awarded US Patent for Potential Remyelination Therapy Mention remyelination and the reaction from most of us with multiple sclerosis is probably, “How soon?” This announcement makes me hope that it’s now a little sooner. The process combines testosterone with a compound that changes the activity of something…
Stop in the Name of Leukocytes
I rolled onto the neurology ward of the hospital that has been dealing with my disease from the beginning. The nurses, whom I’ve met innumerable times, opened with their normal jolly, “How are you?” I can never resist, “Well, I have got MS!” It was 8 in the morning. I’d…
About a year and a half ago, Multiple Sclerosis News Today introduced a forums section. It’s a great place to post a question or comment about MS, or to answer someone else’s question. I’m one of the forum moderators, along with John Connor. I get around better than John,…
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by two forum topics about silent inflammation from August 2019. Have an experience you want…
As a little girl, I loved Christmas. My parents went to great lengths to make the experience magical. Santa was as real as the stockings that hung from our mantle. On Christmas morning, the filled stockings lay right next to the half-eaten cookie. Santa had come! My jubilance grew as…
My Angst Is Not Your Angst
A few years ago, I penned a column titled “My Tired Is Not Your Tired” that expounded on the severity of fatigue that people with MS and other chronic illnesses experience. I contrasted the general fatigue most people occasionally feel with fatigue related to chronic illness. Reflections on that…
After having multiple sclerosis for six years, I’ve decided there are five things “healthy” people might not understand about the disease, and it really drives me crazy. So, I’ve compiled some common misconceptions and advice to help spread awareness among those who aren’t familiar…
FDA Approves Three Generic Versions of Novartis’ Gilenya for Treating Relapsing MS It’s always nice to hear about generics becoming available to replace expensive multiple sclerosis treatments. But I wonder whether these generics will cost less than the brand-name medication. Will their availability help to drive down the price…
Cold? What Cold?!
As an MS patient, I’m always on the lookout for something that will help me stay healthy. Though doctors say flu shots are OK for us, they’re not for me. I’ve had better luck with essential oils. Though they can’t replace all medicines, adding them to my…
With “The Terminator” involved, it’s fair enough that this tale starts out as a father-son thing. My son, Jack, kept needling me to watch a film on Netflix U.K. called “The Game Changers.” My wife had also watched it and heavily backed the suggestion. Both had a knowing gleam…
I used the Bioness L300, a functional electrical stimulation (FES) device, for about seven years to counter my left foot drop. I strapped it to my leg just below the knee. As I began to take a step, it sent a low-intensity electrical pulse down a nerve that runs from…
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Are urinary tract infections a reoccurring problem for you ?” from Feb.
My happiness quotient correlates with my ability to give. I find tremendous satisfaction in doing this. This is one reason that I cherish Thanksgiving. I derive immense pleasure in creating this symbolic meal for those I love. For a subpar cook, I knock the socks off the classic Thanksgiving…
Can your mind control your illness? You might think, “No, of course not, the illness will do what it’ll do. I have no control over that.” What if I told you that you might have more control over it than you think? When I…
I felt defeated. Someone had made a negative comment about me, and it became stuck in my head, making me question why I write. This person challenged the authenticity of my journey, and their remarks frustrated me. But I can’t let one person stop me from sharing my experiences. Multiple…
I was bruised, broken, and in pain. I had been struggling with Rebif (interferon beta-1a) side effects for over a year, ever since my diagnosis. It was the first multiple sclerosis medication doctors put me on, and it did not work…
Immunoadsorption May Be Superior to Plasma Exchange in Treating Steroid-resistant Relapses in MS Steroids may be an effective treatment for multiple sclerosis relapses, but they have negative side effects. Many people report a metallic taste, while others find it hard to sleep. And long-term use can affect bone…
Making (and Appreciating) Space
As an MS patient (and an insatiable polymath), I’m always on the lookout for new information. Recently, I learned about an interesting concept in Japanese culture called “Ma,” and ever since, I’ve been trying to work out how I can incorporate more of it into…
It happened on the coldest day of the season. It was 16 degrees F with wind chill. I was outside, using my electric scooter to take Joey, our cocker spaniel, for his early morning walk. Joey had just finished his business. I was tying the poopie bag when I heard…
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Are you still driving? Should you be?” from Dec. 27, 2018. At…
It is 2 a.m. and I am awake. I sit on the couch with my head in my hands. The leg pain that broke my slumber is now extreme. I have taken my medications, used my topical, and applied heat. All to no avail. Exhaustion meets pain as my eyes…
CHMP Favors Mayzent as Oral Treatment Specifically for Active SPMS Patients in EU Mayzent (siponimod) is one of the newest disease-modifying treatments (DMT). I’m pleased that the Committee for Medicinal Products of Human Use (CHMP), which reviews treatments in the European Union, has recommended that the DMT be approved…
This Could Be the Last Time
Fear grips me. Marijuana relaxes, eases pain, and helps my body work better. It also stirs paranoia, but only when you let it. In bed, a fretful waking dream. This is a problem when you actually have something to be paranoid about! I don’t remember all my last times…
Google has quietly teamed up with Ascension, one of the largest healthcare organizations in the United States, to process the medical records of millions of people. According to The Wall Street Journal, “Project Nightingale” involves all sorts of information about things like lab results, diagnoses, and hospitalization records, and…
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Do We Need a Personalized Approach to Treating MS?” from May 23,…
I remember a time without televised ads promoting medication. We had access to information through our physician or a card catalog. Pharmaceuticals are now a mainstay on our airwaves. And although prevalent, these ads previously had been inapplicable to me. Until now. An ad for Ocrevus (ocrelizumab) aired a…
EMA Safety Group Advises Lemtrada Be Limited to ‘Highly Active’ RRMS Patients at Hospitals with ICUs I’m highlighting this report because, like several Europe-based doctors I know, I think that this decision is an overreaction. While there have been serious complications associated with Lemtrada (alemtuzumab), forcing a patient to…