Almost Half of MS Patients Change or Stop DMT Due to High Financial Burden, Survey Shows I frequently see reports of this on multiple sclerosis patient websites. People with MS say they’ve been forced to change or even stop their treatment because it costs too much. Some people have…
Columns
It’s Only a Matter of Time
There was a time when I didn’t have deadlines. I’d finally finished academia. No more essays ever! In theory, I still had seven essays to write. Luckily, those essays could only improve my grade, so I got away with it. But only to a degree. I just scraped by with…
People with multiple sclerosis have been waiting for this: A full-scale clinical trial testing the effectiveness of stem cell transplantation as an MS treatment. The trial is being conducted by the U.S. National Institutes of Health, and it’s enrolling people with MS at several centers in the United States 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 post “Is It a Multiple Sclerosis Diagnosis or Something Else?” from July 20, 2018.
Traveling with secondary progressive multiple sclerosis is challenging. International travel adds some extra lengthy steps. That said, I have the bug. I’ve always had a hunger to see and experience new people and places. From a young age, I traveled alongside my parents, which gave me a cultural education…
“I will have to use a wheelchair.” That was my first thought when I received a multiple sclerosis diagnosis. After I got my ticket to the weirdest whirlwind weekend that I’d never expected to attend — three days in the hospital — the myths that…
New Trial Compares Stem Cell Treatment to Available Therapies for Severe Relapsing MS This is a biggie. The U.S. National Institutes of Health is conducting a head to head study comparing autologous hematopoietic stem cell transplantation (AHSCT) to the high-efficacy, disease-modifying therapies currently being used: Tysabri, Lemtrada, Ocrevus, and…
Only 347 shopping days to go! So don’t dismiss this as a column about last Christmas (though that’s what it is!) but as possibly the first on the planet about the next one. Luckily, I quite like nut roast. But it is very much “quite” like. I don’t like it…
I read a sad tweet last night (though, in a way, aren’t all of them somewhat sad?) in which a woman told a story about her friend who had just broken up with her boyfriend of one year. She asked her friend how she was holding up. The reply was…
My nose started running about a week before the sledgehammer hit. Then came a chesty cough, not yet as serious as the one that had my wife wheezing, but I was worried that I’d soon catch up with her. I didn’t…
I sat stunned as tears welled. I gazed toward the pain in my knee. My pants were torn. Blood pooled, then dripped down my calf. I was transfixed. The contents of my purse were strewn beneath a car. I reached for my phone but recoiled from the pain in my…
“My arm feels dead.” Not the worst thing in the world, you would think. But what it meant changed my life forever. I’m Jessie Ace, an English writer from Swadlincote, a town in Derbyshire. I titled my column…
Keep Taking the Tablets
What did I write about last New Year’s? As usual, it was related to a bodily function: urinary tract infections (UTIs). Then, readers almost unanimously recommended methenamine hippurate. I had tried several times to get the medication prescribed. Then, a few months ago, my local multiple sclerosis…
After I wrote my last column about essential oils to combat the common cold, I knew I was doomed to catch something. And that’s what happened … kinda. A few days ago, I felt what my family calls “a throat thing” coming on, but thankfully, my friend Sandy hooked…
Santa Is on a Secret Mission
This would be Santa’s third year as a disabled, magical creature. He seemed to be the only one but took some comfort that even the mighty Avengers had taken a few casualties. Not a Christian thought for someone who was once considered a saint. However, illness had ground down…
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.
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.