living with MS

Belong.Life has launched a free and anonymous social network app to offer support for people with multiple sclerosis (MS), their caregivers, and healthcare professionals. The app is called BelongMS and is now available…

I canceled my April blood draw. The protocol for Lemtrada (alemtuzumab) requires lab work each month because the treatment can have serious side effects. But I spoke with my neurologist and we decided that I could skip it. Blame it on COVID-19. My legs are stiffer than they were two…

The Multiple Sclerosis Society of Canada is launching a virtual effort that seeks to connect multiple sclerosis (MS) communities across the country and raise funds for research in observance of Multiple Sclerosis Awareness Month in Canada. As part of the initiative, called #WeChallengeMS, Canadian…

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 post, “Are you using vitamin supplements?” published on October 17, 2019. Share your concerns,…

Staying active can help you to manage multiple sclerosis (MS) by helping to reduce the severity and frequency of many symptoms. For example, fatigue is my worst symptom and my narcolepsy doesn’t make it any better, but a regular workout routine has reduced my exhaustion. I love the gym,…

Multiple sclerosis (MS) patients who are obese experience a faster degeneration in their optic nerve tissue than those of normal weight, a study found. Since optic neuropathy correlates with greater nerve cell loss in the brain, tracking changes to the retina may be a feasible way to determine…

Starting treatment with Ocrevus early can lower almost by half the need for a walking aid in people with relapsing forms of multiple sclerosis (MS) over six years, new analyses of Phase 3 trial data that compared immediate initiation with a two-year delay show. A separate analysis also found…

Shorter Ocrevus Infusion Time Up for Approval in US and Europe One of the drawbacks to infusion therapies is the time a patient spends in a recliner receiving the medication. For Ocrevus (ocrelizumab), nearly half a day is required for the infusion itself. Add on pre-infusion care and post-infusion…

Researchers at Vrije University Amsterdam in the Netherlands are inviting employed people with multiple sclerosis (MS) to take part in an online survey, in the form of three questionnaires spaced over two months, on their working life. This study will investigating potential connections between the perceived severity of MS symptoms, 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 post “An Open Letter to a Newly Diagnosed Patient” and this column by John…

Well, this is super weird. Being told to stay home and leave our houses only for food, medication, or exercise is bizarre for those of us in England. It’s starting to take a toll on my mental health.  The other day, I stood in line at…

I have a new personal hero. His name is Ralph Wendorf. We probably don’t have much in common. He’s not even an MS patient! I’ve never met him, and I likely never will. He lives across the country from me, in New Mexico, but thanks to a local broadcast that…

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 post, “Neurologists now holding telemedicine/virtual appointments” from March 24, 2020. Post your concerns,…

The state of our world lies heavy on my shoulders. I worry about and miss my family. Our geographical distance, although unchanged, seems to have grown exponentially. Is everyone so far, or am I so very confined? I understand how a prisoner in solitary confinement finds his own perception…

People in Japan with lesions in the cerebral cortex due to multiple sclerosis (MS) were found to have greater cognitive problems, or difficulties thinking, than those without lesions in this area of mostly gray matter that surrounds the brain, a study reports.  Lesions confined to the…

Through two new initiatives, multiple sclerosis (MS) patients and their healthcare providers can contribute to a global effort to study and mitigate the impact of COVID-19 in MS and related disorders. The initiatives are aimed at helping clinicians identify the best way to manage the novel coronavirus in…

With everything being so awful, the goal is to write uplifting copy. OK, sounds like my sort of gig. One way of dealing with things is to become self-absorbed with the old MS. I think it’s getting jealous. How can a mere virus get all this attention? MS: “I’m far…

The Consortium of Multiple Sclerosis Centers (CMSC) and the National Multiple Sclerosis Society have created a new database to track COVID-19 infections in people with multiple sclerosis (MS) and related diseases. The database, called COViMS (COVID-19 Infections in Multiple Sclerosis and Related Diseases),…

Changing the gut’s microbial community (microbiota) with antibiotics prevented the development of multiple sclerosis (MS), but not its progression after the disease was established, data from a mouse model of the disease show. These findings support evidence that microbiota manipulations affect inflammatory immune responses involved in MS development, but…

Specialist inpatient rehabilitation is a cost-effective strategy that can improve the clinical outcomes of patients with multiple sclerosis (MS), particularly those at more advanced stages of the disease, a study in the United Kingdom (U.K.) found. The study, “Cost-efficiency of specialist inpatient rehabilitation for adults with…

Regular Exercise ‘Strongly Recommended’ to Ease Fatigue in MS This may seem like a no-brainer. But once upon a time, neurologists told people with MS to avoid exercise. They told us it would overheat us or make us tired. Over the past few years, this advice has flipped 180…

I just finished my third week of working from home due to the coronavirus, and I’ve learned a few things about what it takes to be successful outside of the office. Here are a few helpful tips for MS patients who currently spend more than a few hours behind a…

I’ve just been sentenced to at least 18 months in solitary without time off even for good behavior! Pretty harsh. Luckily, I’m match fit. I’ve already previously done nearly a year trapped in my bedroom with only a commode and basin for most of the day. That was tough.

Dr. Aaron Boster assessed the gait of his multiple sclerosis patient, who walked forward and back. Earlier, he had checked the patient’s seventh cranial nerve by having him close his eyes tightly and smile. Then, Boster checked the ninth, 10th, and 12th cranial nerves by having him stick out his…

Editor’s note: This week’s column is inspired by the forum topic “7 Strange and Unusual Symptoms of Multiple Sclerosis” from Nov. 8, 2019. Post your concerns, questions, or experiences in the comments below or at the original forum entry. People with MS often share the symptoms that prompted…

Physical exercise can ease fatigue in people with multiple sclerosis (MS) and potentially benefit them in many other ways, and should be part of rehabilitation programs for patients, a large review study suggests. The study, “The impact of physical exercise on the fatigue symptoms in patients with…

A study from Spain found the diet of multiple sclerosis (MS) patients to contain more fat and protein, and fewer carbohydrates, than recommended, which was linked to abdominal weight gain and higher levels of inflammation. As “an excessive intake of lipids” is known to be “related to oxidative stress…

Using a mix of broad diagnostic terms and more disease-specific ones may help physicians and patients to better communicate symptoms of autoimmune disorders like multiple sclerosis (MS) that are not always obvious or easy to explain, a study reported. The study, “Using autoimmune strategically: Diagnostic lumping, splitting,…

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. Leave a comment here or at the original forum category. I’m moved (and, truth be told, empowered) by the #HighRiskCOVID19 hashtag trending…

Life is unscripted. It is messy and uncertain, with change being the only constant. Much like living with multiple sclerosis, adapting to change is directly correlated to our ability to thrive. We are reminded of this as we adjust to our new reality in the throes of COVID-19. Seemingly…