living with MS

I have every single malady associated with MS. I’m absolutely positive. Because whenever I find out about a new one, or a new study that says we don’t sleep well, or we twitch or tremble, or suffer from this deficiency or that, I’ve got it.

Common Allergy Treatment Restores Protective Neuron Coating in MS, Trial Suggests This is the kind of news we all hope to hear. A treatment that will repair our frayed “wires” and, in doing so, restore some of the function that MS has stolen from us. This is…

Both of my sons — and, if I’m being honest, my husband — love Kraft Macaroni & Cheese. Yes, that horrid stuff that comes in a blue box, the kind that you make with a packet of powdered cheese, milk and butter. Whenever I put some on the table…

  About 10 years ago, in the days before my MS, I had a whole raft of self-imposed jobs. As a new age man, one of these was doing the washing. Yes, this combated the usual bloke’s role in a heterosexual household, but to counter this, I was very…

If you have MS, you’ve probably used a specialty drug. My first was Avonex, which I began to use about 1998. Several others followed. There’s no formal definition of a specialty drug, but these therapies have several things in common. First, they’re expensive. According to the vice president in…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this column about terms starting with the letters J and K.) Symptoms of MS Kyphosis More commonly referred to as “hunchback” or “dowager’s hump,” kyphosis is a term that refers to an outward curvature of…

Some days are easier than others, and some days are just not easy at all. Today I find myself in the latter of the two. It’s Monday morning, and my Sunday was insane: insanely busy, insanely fun, and insanely difficult. While…

I’ve been at a conference the last few days where scholars from around the world are discussing health literacy. It’s a subject much more complicated than just wondering at what level a person might read, or if they can read at all. It’s also a discipline rooted in…

For those of us in the workforce, our MS can sometimes make a workday challenging. The Americans with Disabilities Act allows for an employee to request reasonable accommodations from their employer. Included in the act are three broad accommodation categories. One focuses on the hiring process, and…

Pain, walking problems and fatigue are factors that most strongly lower self-perceived health in multiple sclerosis (MS), researchers at the New York University Langone Medical Center have found. This challenges current treatment approaches focus mainly on physical disability. It suggests that “invisible disability” may be more important to how patients…

We are familiar with the “why me” moments? I reference this often because it is a recurring subject in the lives of people with chronic illness. As a little girl I’d ask my parents why my heart is sick, and as an adult, I still ask why have I…

Most multiple sclerosis patients who try Bayer’s BETACONNECT auto-injector stick with their treatment, a study reports. The electronic product may overcome the problem of many patients failing to stick to a therapy  schedule because of what they consider hassles connected with injections. An auto-injector is one that patients can use…

I’ve had a cold for two weeks. So, I’ve been more tired than usual. Too tired, in fact, to write the column that was supposed to post last Tuesday. (I apologize to all of you who wait, with bated breath, for the appearance of the MS Wire each…

I am an avid dog lover and very involved in volunteering with the golden retriever rescue here in Southern California. On any given day, you will find my 8-year-old rescue, Abby, here along with two to three other happy golden retrievers. I may have  rescued Abby physically, but there…

When talking about MS research, we tend to focus on drug development because improved therapies, and even the cure for MS, will come from pharmaceuticals. But what do we know about other MS research that doesn’t involve taking a pill or enduring an injection? I’m talking about those…

Researchers at Duke University want to determine if data collected through an iPhone app can ably capture individual experiences in people with multiple sclerosis to improve doctor-patient communication and overall disease understanding. According to a National MS Society report, the researchers want to investigate the benefits combining mobile phone-based data with machine learning (the ability of a smartphone to mimic human behavior) and patient participation. The study is currently enrolling MS patients, 18 or older, live in the United States and be able to read and understand English. Participants must own or have daily access to an iPhone (iOS 9 or greater) to download a free, MS Mosaic app from the Apple Store. The app is not yet available for Android phones. The rationale behind the study is that MS can be an extremely complex condition, with symptoms ranging from numbness, walking difficulty, to vision impairment and fatigue. Each patient's experience is different and can be affected by medication, emotional health, and environmental factors. This complexity can complicate research. Study participants will receive daily, weekly and monthly questionnaires to fill about their symptoms. Daily surveys should take no longer than a minute to complete, and weekly surveys about ten minutes. Initial registration should take about 20 minutes, the NMSS report says. In some of the surveys, participants will be asked to perform specific tasks while holding or using the mobile phone, like walking 25 steps, turning around, then walking back 25 steps – while holding the phone. Other tests include tapping on the phone screen repeatedly to test motor speed, coordination and fatigue, or playing a pattern game to assess short-term memory. These tasks should take about five minutes each. Patients can choose not to answer some of the questions or to participate in certain tasks. All information is collected through the app, and will be sent to a secure data server. Participants can export data to share with a healthcare provider. Each person will be identified by a code, and data will be analyzed in a way that maintains confidentiality. Researchers, however, be able to identify a participant should they need to do so for "research integrity or legal purposes," the report states. Questions regarding this study can be answered by sending an email to [email protected].

Fast Forward, a non-profit subsidiary of the National Multiple Sclerosis Society, will give financial support to TG Therapeutics to advance TGR-1202 (umbralisib) into preclinical testing as a potential oral therapy for progressive forms of multiple sclerosis. The support, whose value was not specified, is part of a Sponsored Research Agreement between Fast Forward and the company. Research work will be led by Lawrence Steinman, MD, a professor of pediatrics, neurology, and neurological sciences at Stanford University. TGR-1202 is an orally administrated inhibitor that blocks a signaling enzyme called PI3K delta. Immune cells such as B-cells have high levels of this enzyme, which is thought to be important for cell proliferation and survival. "We look forward to evaluating umbralisib [TGR-1202]'s effect on our preclinical progressive MS models in hopes to move umbralisib closer to clinical development in MS," Steinman said. The approval of Ocrevus (ocrelizumab), by Genentech, to treat primary progressive and relapsing multiple sclerosis underscored the potential of B-cell-targeted therapies for MS patients. As a result, investigative drugs that also aim to bolster B-cell survival or activity, such as those being developed by TG Therapeutics, are an attractive approach to potentially treating patients. Another potential treatment by the company — an engineered antibody, TG-1101 — targets a specific sequence on the CD20 protein found on immune B-cells. This infusion therapy is now in two Phase 3 clinical studies for relapsing multiple sclerosis, ULTIMATE I and ULTIMATE II. Both are currently enrolling patients at sites in Kentucky, Tennessee, and New York.

Sometimes walking, even with an assistance device, can be very challenging because of the extreme muscle weakness that I experience. The slow, off-balanced gait that has been my constant companion for many years prior to my 2010 multiple sclerosis (MS) diagnosis is definitely on the decline. Accepting the…

I became a Christian when I was 8, and though I’ve wrestled with my faith at various points in my life, I’ve never once doubted my decision to follow Christ. Multiple sclerosis didn’t change this fact in the slightest. In fact, my illness made my faith stronger and…

I was going to write about something else, then my MS got in the way. Intellectually, I know MS is very up-and-down, but often when the down hits, I think the worst has happened. I went to my exercise class this week and struggled. Got home and recovered.

April Hester has MS. She was diagnosed in 1996, just after she turned 20 years old. Like many of us, April has balance and fatigue issues. Her legs can become tired, her foot sometimes drops and she falls a lot. But unlike many of us, April and her…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this column about terms starting with the letter I.) Symptoms of MS Incontinence A common symptom of MS, incontinence refers to an inability to control one’s…

I pride myself on never lending power to my limitations, but when I became the primary caretaker for my husband after he underwent hip replacement surgery, my limitations were reached. Ten days later, I am slowly emerging as a somewhat functioning individual. As with most challenges, I tend…

Do you ever stop and ponder the value of MS drugs? I’m not talking about if they work and the ways they improve our lives. I’m thinking of the COST of them and what their pricing means to investors. I get several market analysis reports on the pharmaceutical industry,…

When you’re living with multiple sclerosis, it’s important to surround yourself with a community of people who give you the kind of support and understanding you need. When I was diagnosed in 1986, there was no internet to help me find a community,…

April and Bernie Hester are busy planning their second 500-mile thru-hike of South Carolina's Palmetto Trail, which they will begin on Oct. 1 to raise awareness for multiple sclerosis and funds for the National MS Society. Thousands of people hike parts of the trail every year, but few do the entire 500-mile hike, said Suzette Anderson, of the Palmetto Conservation Foundation (PCF), an organization dedicated to conserving South Carolina's natural and cultural resources. The couple's "Finish MS Hike" is the second time they'll be hiking the full trail this year. In April they started hiking from the sea and 66 days later completed the trail in the mountains. This time they'll start in the mountains and end at the sea. The couple will traverse over mountains, on trails, through cities, and on roadways. April, who has MS, is hoping that her efforts will bring much-needed awareness to the condition and that the pair can reach their goal of raising $100,000 for MS research toward a cure. Their effort, combined with the debilitating effects of MS, are among the reasons why April and Bernie Hester were recognized as trail ambassadors by the PCF. The couple will post regular updates on their “Finish MS Hike” blog and Instagram account, to allow people to follow their adventures, read about their journey, and gain insight as they face and conquer challenges along the way. The couple has already written a few entries to keep their audience informed. The Palmetto is the longest trail and largest trail construction project in South Carolina. Today, the trail crosses the state from Walhalla in the mountains of Oconee County to Awendaw on the coast in Charleston County. Another 150 miles in the Midlands and Upstate remain to be acquired and constructed. To help raise money to "Finish the Trail," the PCF and RJ Rockers Brewing Company have combined their passions for trekking and craft beer to create Palmetto Trail Pale Ale. A portion of sales goes to support and finish the Palmetto Trail. You can buy Palmetto Trail Pale Ale at any of the following locations: RJ Rockers Brewery, Craft and Draft, Texas Roadhouse, Thirsty Fellow, Flying Saucer, Capital City Club, Triangle Char+Bar, Bohemian Bull, Publico Kitchen & Tap.

Relapsing-remitting multiple sclerosis (RRMS) patients accurately report the use of the RebiSmart autoinjector to their neurologists, a questionnaire-based study has found. The Phase 4 noninterventional CORE study also suggests that being knowledgeable about RebiSmart is a key factor in improving usage in younger patients and those with lower disability levels.

Our world is chaotic right now. I literally have to disengage from social media and periodically turn off the news just to rejuvenate my spirit and find some peace. It is difficult to remain positive in a pessimistic society. We are divided by politics and spiritual beliefs. We are…

I’ve been using a Bioness L300 for just over five years to counter my foot drop. Without the L300 strapped to my left leg, it’s difficult for me to walk more than 25 or 30 steps, even with two canes. The L300 is a functional electronic…

Irritability can strike anyone at anytime, and pain, illness, depression — or just having a bad day — can all lead to feelings of anxiety and irritability. To those of us with multiple sclerosis (MS), being irritable can come from all of those causes, plus a whole lot more.