living with MS

#AANAM – RRMS Patients Switching to Lemtrada Report Greater Satisfaction with Treatment and Improvements in Quality of Life I’m a self-proclaimed secondary progressive, rather than a remitting, multiple sclerosis (MS) person. But a year after round two of Lemtrada (alemtuzumab), I can agree with this report. Several of my…

Exactly one year ago on this day of writing, I was down and out. This year, I’m not exactly fighting fit, but the same set of circumstances has pushed me the distance. But it didn’t floor me. OK, OK, I’ll stop with the pugilistic metaphors — it’s not exactly…

When I read online posts from people who treat their multiple sclerosis (MS) with vitamins and supplements, I wonder how many of us do that. And if these supplements really help. The people at the Accelerated Cure Project, which surveys those living with MS about things such as this,…

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 “Lhermitte’s Sign…” from May 4, 2018. What is the barber chair phenomenon? This…

I am a positive person with not-so-positive moments. These moments don’t quantify my essence. Nevertheless, they sure try. I work hard to keep the negativity at bay, but I don’t always succeed. As I write, I’m overcome with pain and fatigue. This is not the exception but the…

Ouch! The out-of-pocket cash that people with multiple sclerosis (MS) lay out for their medications increased 20-fold between 2004 and 2016. That information comes from a study recently published on the Neurology website. Looked at another way, monthly out-of-pocket costs for MS meds rose from about $15 to about $309 over 12…

Women with MS Have Higher Prevalence of Sexual Dysfunction, Study Reveals I’m surprised that someone felt it necessary to conduct a formal study of this. A glance at multiple sclerosis (MS) groups on social media, although unscientific, would suggest that this is a common problem. And if you’re going…

A bird in flight, a field of flowers, a dog surrounded by butterflies, a portrait of a toddler — they’re all part of the artwork by the multiple sclerosis (MS) community done for a Multiple Sclerosis Association of America (MSAA) showcasing program, now marking its 10th year. Through its…

My husband and I were driving home from church a few weeks ago, cars zipping around us every which way. He looked at me and said, “Do you ever feel like we’re on the edge of something? Like life is moving too quickly in urban America and something is about…

As his moniker suggests, multiple sclerosis (MS) patient Paul Pelland is in it for the long haul. Known as “Longhaulpaul,” Pelland recently set a world motorcycling endurance record — his third — on a dynamometer while raising $18,500 for MS research and patient support. Pelland rode his Yamaha Star Venture for…

Women with multiple sclerosis (MS) are more likely to experience sexual dysfunction and sexual distress than those without the disease, a study reports. According to researchers, the high prevalence of sexual problems among these women may be linked to their age, degree of physical disability, and depression. The…

A study suggests that it may be possible to create synthetic speech based on recordings of brain activity in people with irreversible speech loss due to neurological ills, such as multiple sclerosis (MS), Parkinson’s, or stroke. The system uses tiny electrodes implanted on the surface of the brain that directly records…

First in a two-part series. Do I give in or fight? I’d had all the tests, and in the summer of 2009, my fears were confirmed: I had MS. My first question was, “Would I end up in a wheelchair?” My neurologist, who must have given the answer innumerable…

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 “Have you ever been discriminated against due to your disability?” from May 29,…

Editor’s note: This is a guest column by Kristin Hardy, who was diagnosed with primary progressive multiple sclerosis in 2002. Her sister Margaret was diagnosed the same year with relapsing-remitting MS, complicated by trigeminal neuralgia. You are invited to follow Kristin’s blog at www.hackmyms.com. ***…

The Multiple Sclerosis (MS) Trust, a charity organization that provides support to MS patients in the United Kingdom, is urging them to remain active and find ways to introduce physical activity into their daily routine, as part of its “Move it for MS” campaign. The organization’s…

I spend a great deal of time in my head. I think. A lot. Perhaps I do so more than I should, but then again, it is a haven at times. My thoughts run the gamut from the serious to the inane. Today my thoughts…

Cognitive and neuropsychiatric problems caused by relapsing-remitting multiple sclerosis (RRMS) — such as memory and processing issues, depression, and irritability — are the main source of strain among life partners of MS patients with mild disability, a study finds. The study, “Caregiver strain among life partners…

A clinical trial testing a computer program called Deprexis as a home-based therapeutic strategy for multiple sclerosis (MS)-related depression is enrolling participants with all types of MS  at three sites in the U.S. and two in Germany. The U.S. study locations are the Cedars-Sinai Medical Center,…

A link between fat molecules called ceramides and worsening disease in overweight and obese people with multiple sclerosis appears to exist, a study reports, with its findings suggesting that ceramides prompt the growth of immune cells called monocytes, which in turn spurs disease progression. These results also strengthen the likelihood that lifestyle factors, like diet and weight, can act as disease modifiers, its researchers said. High body mass index has been linked to the risk of developing MS, but for reasons that aren't clear. One idea is that weight-induced differences in lipids (fat molecules) in the blood, because they are involved in several cellular signaling processes, may affect MS and its course in people with higher BMIs. To test this hypothesis, a team led by researchers at the Advanced Science Research Center (ASRC) at The Graduate Center and at the Icahn School of Medicine at Mount Sinai analyzed 54 patients with relapsing-remitting MS (MS), ages 18 to 60, and with normal or high BMIs (27 people in each group). Participants were followed for two years. BMI is a measure of body fat based on height and weight. A normal BMI is defined as one between 18.5 and 24.9, while a person is considered overweight with a BMI of 25–29.9, and obese it is 30 or higher. Researchers took blood samples, and looked for differences between the groups in terms of both immune cells and blood lipid profiles. They then validated their findings in a separate group of 91 RRMS patients. Patients with high BMIs tended to have more monocytes than those with normal BMIs. Monocytes can travel through the blood to tissues where they develop into macrophages, immune cells with various functions that are best known for "eating" invading bacteria. Monocytes can also travel to the brain and damage nerve fibers. Overweight and obese patients also had significantly higher levels of ceramides compared with normal-weight patients, and the researchers wondered if a link might exist between the two. Through a set of experiments in cells, they discovered that ceramides cause epigenetic changes in monocytes; that is, they alter the way their genomes are "read," so they alter gene activity. Specifically, ceramide-treated cells showed a type of epigenetic change called methylation — which generally turns genes "off" — in genes that normally help prevent cells from dividing. Conceptually, these genetic changes serve to unleash monocytes, leading them to grow more (proliferate) than they otherwise might. The researchers also found more methylation on the genomes of monocytes from high-BMI patients than those from low-BMI patients, and they noted that the overweight or obese patients also tended to have greater disease activity, worse disability progression, and more brain lesions on MRI (magnetic resonance imaging) scans on follow-up. Finally, the researchers tested a mouse model of MS, giving one group of mice a standard diet and another a high-fat diet. Mice fed the high-fat diet were found to have greater disease severity, more brain lesions, and more monocytes, confirming the findings seen in MS patients. "This study gives us a much-needed view into the environmental influences that can affect and change the behavior of cells in an individual's body," Kamilah Castro, the study's first author, said in a press release. "Our findings suggest that increased levels of saturated fat as a result of dietary habits are one likely cause of the epigenetic changes that advance MS, which gives us a starting point for a potential intervention." According to the team, the findings support the concept of nutri-epigenomics: that is, the ability of food to alter the way the genetic information is interpreted by each cell, and suggest that "weight management and dietary intervention" might affect MS prognosis. One limitation was the study's small size, its researchers noted. "While we consider our results … very exciting and mechanistic, we acknowledge that the potential consideration of ceramide levels as biomarkers for disease progression in MS would require validation ... using larger cohorts with a longitudinal and/or cross-sectional design," they concluded. "It will also be important to evaluate the effectiveness of dietary intervention (with an emphasis on the reduction of specific classes of saturated fats), as potential modulator of plasma ceramide levels and possibly of disease course in MS patients."

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 “Tremors Caused by MS” from April 30, 2018. What’s shaking? If you…

I am balancing my laptop on one pillow and a leg brace. I have myriad MS-related health issues; alas, this is not among them. After meniscus surgery, aggressive arthritis, and a loss of cartilage, I’m facing knee replacement. Due to a busy schedule and the sustaining effects of Rituxan (rituximab),…

  It’s tough paying for medications. Whether they’re for multiple sclerosis (MS) or another illness, Americans are having a hard time coming up with the cash needed to cover the cost of their meds. Many people are developing workarounds and compromises to deal with the problem. And in some…

The “regulatory environment” favored Mayzent (siponimod) being approved as an oral treatment for people with relapsing multiple sclerosis (MS) — specifically, clinically isolated syndrome (CIS), relapsing-remitting multiple sclerosis (RRMS), and active secondary progressive MS (SPMS) — a top executive with Novartis said, although the pharmaceutical company had requested a label covering all with SPMS. Dan…

What do a broken-down, out-of-tune piano and multiple sclerosis have in common? Well, they’re both disorderly and confusing, to say the least. But there’s something else — they have the potential to bring about something positive. I learned this from a podcast called “Hidden Brain,” specifically from an…

In February of last year, I stopped. Walking more than a few steps was suddenly impossible. I’d fought, taken every medication and supplement possible, but I’d lost. Maybe positive thinking and mindfulness would have helped, but for me, that was a step too far! Research, organization, and…

Editor’s note: “Need to Know” is a series inspired by common forum questions and reader comments. Have a comment or question about MS? Please visit our forum. This week’s question is inspired by the forum topic “Tinnitus and MS: An Annoying Combination” from Jan. 4, 2017. What is…

  Fatigue falls hard as I look out on the first hot day of the year. I struggle to focus as my head bobs. This is my new normal. The attacks are merciless,…

The Consortium of Multiple Sclerosis Centers (CMSC) announced two contests that will be featured at its Annual Meeting, May 28–June 1 in Seattle, Washington. The contests, called “Design for Rehabilitation — Take the Challenge” and “CMSC Neuroinnovator,” are aimed at creating new technologies to improve the quality of…

Complementing its nationwide network of multiple sclerosis (MS) research and clinical services centers, the U.S. Department of Veterans Affairs (VA) has teamed up with the National Multiple Sclerosis Society (NMSS) to improve care for the veterans it serves and their families. The VA and the NMSS partnership was formalized…