Living with MS

Photo courtesy of Lissette Mares Day 19 of 31 This is Lissette Mares’ (@ms.ironman) story: There is so much in life we get to choose but there’s more that is out of our control. I find myself telling people we are all dealt with many cards in life,…

We are a three-cat household because, well, felines are awesome. They’re entertaining and sweet. They love to give cuddles. And they’re fairly self-sufficient — no baths or walks necessary. Just keep food and water in ample supply, and they’re good to go. The only problem? Litter boxes. We have this…

You might be wondering why a Yank like me is writing about multiple sclerosis care in the United Kingdom. It’s because a survey caught my eye the other day that I think deserves a closer look. The survey, conducted by the MS Trust and reported by…

Photo courtesy of Tiffany Wilcher Day 18 of 31 This is Tiffany Wilcher’s (@tmwilcher) story: My name is Dr. Tiffany Wilcher, and I was diagnosed with multiple sclerosis at the age of 22 while serving my country in the U.S. Army as a combat medic. I had no…

Among healthcare providers in the U.K., considerable variation exists in marking the transition from relapsing-remitting multiple sclerosis (RRMS) to secondary progressive multiple sclerosis (SPMS), a study based on interview responses reports. Neurologists and nurses with MS specialties also expressed a reluctance to label patients as having progressed to…

Photo courtesy of Marek Klimkowski Day 17 of 31 This is Marek Klimkowski’s (@runningwithms_pl) story: My MS story began probably when I was 14 years old, but the disease wasn’t confirmed at that time. I had been bitten by a tick and diagnosed with Lyme disease. I…

Paralyzed Veterans of America (PVA) has formed a committee to better address the needs and interests of veterans with multiple sclerosis (MS), including help with obtaining care and disability benefits. The nonprofit PVA is the only congressionally chartered veterans organization working to assist and represent veterans with spinal…

“Mirrors don’t lie. They only show a part of truth.” — Lara Biyuts I’ve written about how my reality feels jagged compared with actual reality. I wrote, “The woman looking back at me isn’t whom I perceive myself to be.” I’ve been pondering this recently. The realism of reality With…

Photo courtesy of Pamela Neckameyer Day 16 of 31 This is Pamela Neckameyer’s story: My symptoms started in 2004. I would trip and fall for no reason. My mind would say “walk” but my legs wouldn’t move for a few seconds. I went to a neurologist who tested…

Photo courtesy of Melody Sapien Day 15 of 31 This is Melody Sapien’s (@autoimmune.wellnesswarriors) story: Eight years ago, I was diagnosed with multiple sclerosis. I was 15 years old. In a lot of ways, I am grateful for my diagnosis because, without it, I would have never…

The MS Society of Canada‘s virtual MS Read-a-Thon event has been extended to March 20, giving children and families throughout Canada extra time to enjoy reading while raising funds for the multiple sclerosis (MS) community. The event, which began Jan. 27, seeks to generate $110,000 to…

Ketogenic Diet Eases Symptoms, Aids Life Quality in Small RRMS Study This new report says that a ketogenic diet might help people with MS. It’s certainly helped my wife lose weight, but will it help my symptoms? I wondered about that in a recent ‘MS Wire’ column.

Photo courtesy of Rennie Rankin Day 14 of 31 This is  Rennie Rankin’s (@yogaren) story: My name is Rennie and I have been living with MS since the early 1990s, diagnosed on 6/2/2003. I will never forget how surreal it was hearing my diagnosis and feeling…

While people who smoke cigarettes are more likely to be diagnosed with multiple sclerosis, MS patients who are daily alcohol drinkers are more likely to show signs of faster neurodegeneration, a new study highlights. The findings suggest that quitting smoking and cutting back on alcohol would be beneficial for people…

Photo courtesy by Michael Drohan Day 13 of 31 This is Michael Drohan’s (@mdrohan) story: I was diagnosed with multiple sclerosis at 18, right before high school graduation. I describe the 18 years since as a slow decline in my abilities. My relapsing-remitting MS has shifted to…

Photo courtesy of Inês Velosa Day 12 of 31 This is Inês Velosa’s (@inesdnobre) story: On June 6, 2021, after some confusing days, my husband was diagnosed with MS. I remember hearing this diagnosis for the first time and thinking that life, as we knew it, was…

It wasn’t an argument; it was a reality check. I was happy, nay, self-indulgent. Within a day, the ol’ stand-up show that I produced at London’s Comedy Store for 30 years had gotten another booking at a countryside marquee just outside the city. I mustn’t disparage, as it’s our…

For the past few months, my wife, Laura, has been following a ketogenic diet, and she’s lost a bunch of weight. But in addition to helping people slim down, the low-carb keto diet may have other benefits, including potentially for those with MS. A small study that will…

Photo courtesy of Tyler Campbell Day 11 of 31 This is Tyler Campbell’s (@tcspeaks32 ) story: At 22, I was suffering from paralysis and even erectile dysfunction. I felt so lost and yearned to be found. I needed a friend, someone to lean on who wouldn’t judge…

A substantial amount of disability worsening happens independently of relapses in people with multiple sclerosis (MS), including those in earlier stages of relapsing-remitting disease, a study in a large patient database reported. While its findings “confirm relapses contribute to the accumulation of disability, primarily early in multiple sclerosis,” data…

Photo courtesy of Carolyn Hinds Day 10 of 31 This is Carolyn Hinds’ (@carriecnh12) story: Mild cognitive impairment, or CI for short, probably doesn’t sound as debilitating or challenging when compared to other symptoms of multiple sclerosis, but it is. The word “mild” can be very misleading because…

The number of nurses in the U.K. with a specialty in multiple sclerosis (MS) care rose significantly between 2018 and 2021, but these specialists on average carry a patient caseload that’s 50% higher than recommended, as a pronounced rise in MS cases was also noted, the MS Trust reports.

“Most of the time, the greatest rewards come from doing the things that scare you the most. Maybe you’ll get everything you wish for. Maybe you’ll get more than you ever could have imagined. Who knows where life will take you? The road is long, and in the end, the…

Photo courtesy of Cassidy Krygger Day 9 of 31 This is Cassidy Krygger’s (@cassidykrygger) story: I remember the day of my first MS symptom, more than three years ago, as clearly as if it were happening now. It was October 2018, and I realized that every time I…

Roche is teaming up with the University of Plymouth in the U.K. to help develop Floodlight MS, the company’s app to monitor multiple sclerosis (MS). “We were pleased to collaborate with Roche on an innovative project to validate the Floodlight MS app and, as with everything we do…

Photo courtesy of Kaci Bell Day 8 of 31 This is Kaci Bell’s (@myelinmoxi) story: Something I feel a handful of people in the disabled community have experienced but are too shy to open up about is “imposter syndrome.” Imposter syndrome and chronic illness rarely fall in the…

Photo courtesy of Alexios Touloupis Day 7 of 31 This is Alexios Touloupis’ (@alexios4real) story: I was diagnosed with multiple sclerosis in March 2016, my junior year of high school, when I was only 16. For months I struggled with one health problem after another. It was…

Multiple sclerosis (MS) patients reported fewer difficulties regulating their emotions, and reduced depressive symptoms when they applied trait mindfulness techniques, a study showed. Trait mindfulness refers to an innate ability to pay and maintain attention to moments in the present with an open, non-judgmental attitude. Notably, the use of…

Photo courtesy of Kali Thomas Day 6 of 31 This is Kali Thomas’s story: Just a few months after my 21st birthday, in July 2013, I received a call that would change my life forever. I will never forget my doctor’s words: “I’m looking at your MRI, and I…

Photo courtesy of Agata Day 5 of 31 This is Agata’s (@beatingmyms) story: It was 2019. My life was about to turn upside down, and I had no idea. I should’ve noticed the signs: miscarriage, anxiety, depression. I just got married to the love of my life. I…