living with MS

I am frequently commended for my demeanor. For my strength amid pain and adversity. For my optimism and happy disposition. For making the most of my circumstances. I love my steadfast faith. I love my fierce determination. I love my decision to combat pain and adversity with hope. I love…

Even at a low level of disability, people with multiple sclerosis (MS) have substantial indirect and informal caregiving costs due to disease progression — with unemployment markedly adding to the economic burden, a Spanish study reports. The study, “Economic burden of multiple sclerosis in a population with low physical disability,” was published in the journal BMC Public Health. MS has significant impact on health-related quality of life, with disability and fatigue — two hallmarks of the disease — hindering patients' ability to work or study. This often results in early unemployment. As MS progresses, many individuals often need the support of caregivers to perform daily life activities. Limited information is available on MS-associated economic burden imposed on patients by the costs of informal care and loss of employment. To fill this gap, Spanish researchers evaluated the cost burden of indirect and informal care for 199 people with MS. Participants (mean age 43.9 years, and 60% females) were followed at 19 MS clinical units across Spain. Among the participants, 172 (86.4%) had relapsing-remitting MS, and 27 (13.6%) had primary progressive MS. The Expanded Disability Status Scale (EDDS) was used to determine each individual’s level of disability. EDDS scoring is done by a trained neurologist, who quantifies a patient’s disability on a scale of zero to 10, in 0.5 increments.  EDDS also is used to monitor changes in disability levels through the course of MS. The greater the EDDS score, the higher the disability level. The team used the 23-item MS Work difficulties questionnaire (MSWDQ-23) to assess the level of hardships participants experienced at their workplace. A patient-reported survey, the questionnaire highlights the extent of psychological and cognitive, physical, and other external difficulties experienced at work by people with the disease. MSWDQ-23 scores range from zero to 100, with a higher score correlating to more significant workplace difficulties. The study population had a median EDDS score of 2, and a median MSWDQ-23 score of 31.5, indicating an overall low level of physical disability. Despite this, MS was found to have a marked impact on the individuals’ work and academic activity. At the time of MS diagnosis, 70.6% of the participants were employed. However, at the start of this study, 9.6 years later, the employment rate among the participants had dropped to 47.2%. The retirement rate increased from zero at the time of diagnosis to 23.6% at the time of study visit. Most participants retired at a mean age of 43.6 years — and 95.7% of them cited MS progression as the reason for retirement. Among the student population, 90.9% reported absenteeism in the year before the study visit. During the same time period, 30.9% of employed participants were absent from work. Overall, 10.1% of all participants took sick leaves during the prior year. Being absent from work, and early retirement, impose several indirect costs in this study population, the researchers found. Sick leave due to MS resulted in a mean annual cost of €416.6 (US$473.59), while work absenteeism accounted for €763.4 (US$867.83) yearly. Early retirement due to MS added an additional mean annual cost burden of €5,810.1 (US$6,604.92). The annual costs per patient due to premature work disability or pension increased to €1,816.8 (US$2,065.34). Caregivers accompanied 72% of the patients for the study visit. The researchers noted that participants' spouses reportedly spent a minimum of more than 200 hours annually in providing care — more than a full-time job. A total 28.1% of participants required paid professional support for their daily activities, such as person to do housework and a physiotherapist. Patients also reported the use of assistive devices and adaptations. Crutch or walking stick use was reported by 10.6% of participants, while 8% had some home adaptation to help in their daily activities. Use of non-reimbursable devices was reported by 21.6%. The mean annual cost of informal caregiving, including activities by professional staff, was €1,328.7 (US$1,510.46). Use of assistive devices added an additional €736.6 (US$ 837.37) yearly. “MS is responsible for a substantial economic burden due to indirect and informal care costs, even in a population with low physical disability,” the researchers said. “Effective therapeutic interventions to improve the management of early symptoms as well as implementing workplace strategies focused on job retention may be essential to decrease the high economic burden of MS,” they concluded.

I’ve been living with MS for nearly 39 years and I’ve never seen the notes my neurologist has written during my office visits. My neuro did hand me a thick folder of notes several years ago. It had material dating back to my diagnosis in 1980, but when we…

I’ve used an electric scooter for nearly 20 years. At first, I only used it when I knew I’d be walking a lot. Now, it’s every day. I used a cane for several years before the scooter. I resisted using both, however, and I’ll bet that many of you who…

Multiple sclerosis (MS) is a chronic illness accompanied by various symptoms. Depression is one of the most common. Depression is a shape-shifter and affects one’s life in different ways. The dark hole Imagine one week everything is fine. You’re known for being a social butterfly…

Kinza Kasher from LeoPlus USA was selected from a list of 10 finalists to receive the $25,000 grant for “Addressing Unmet Needs in MS: An Innovation Challenge,” Lyfebulb and Celgene announced. This initiative’s goal is to encourage the development of innovative solutions to help those…

More than 15 disease-modifying therapies (DMTs) are available in most high-income countries to treat multiple sclerosis (MS). DMTs come in the form of injectables, infusions, and pills. Some are new, others have been around for more than 20 years. Some have a greater possibility of serious side effects than others. Some DMTs are highly effective at slowing or stopping disease progression; others, not so much. It's a difficult choice to make. So, why are some neurologists making it harder? These doctors are handing their patients a medication "shopping list" and telling them to pick one. I see this topic discussed regularly in social media MS groups. Recently, a woman who needs to switch DMTs wrote that her neuro gave her a "handful of (medication) brochures" and told her to go home and decide which medication she wanted. Really? DMT selection shouldn't be do-it-yourself I've been using DMTs for more than 20 years. I've been on Avonex (interferon beta-1a), Tysabri (natalizumab), Aubagio (teriflunomide), and Lemtrada (alemtuzumab). I always had the final say on which med I wanted to use, but I never had to make that decision alone without guidance from my neuro. That's the way a doctor-patient relationship should work. While the final DMT decision should always rest with the patient, your neurologist has the responsibility to use his or her knowledge of the meds and of you to guide you in your choice. Some factors that you both need to consider are: Is the disease progressing quickly or slowly? Your lifestyle: Do you work full time? Do you have a good support system and reliable transportation? If an injectable DMT is in the mix, can you handle injecting yourself monthly, three times a week, or every day? How much possible risk are you willing to accept in exchange for the potential of a better result? An additional and criticial consideration is whether you can afford the treatment. My impression is that cost is rarely thought of or talked about before most physicians prescribe a medication. I see nothing wrong with asking your doctor how much you can expect to pay out-of-pocket. (Or, for the doctor's office to ask this of your insurance company). If you feel your neurologist doesn't know all of these things about you I suggest that you be proactive and fill in any blanks. The final choice is yours With all of that knowledge, you can probably narrow down the most appropriate DMT candidates for you to three or four. Then it's time for your neuro to clearly explain why those are the best choices and to review the pros and cons of each. Then, and only then, it's time for you to make the final choice. And your decision might be not to use any medication. That wouldn't be my choice, but it might be yours. After all, you're the one who'll be living with whatever choice you make. What has been your experience? Was your neurologist helpful when selecting a DMT or were you given "a handful of brochures" and told to do-it-yourself? How did you choose? You're invited to visit my personal blog at www.themswire.com.

The relative risk of developing cancer was found to be higher in multiple sclerosis (MS) patients who more frequently switched between disease-modifying treatments, according to a study. In addition, researchers found an increased incidence of cancer in male MS patients from 20 to 50 years old, and in female…

Stranded. Not on a desert island but in an empty hospital ward. Earlier, it had been filled with fellow MSers getting their Ocrevus (ocrelizumab) infusions. I write “fellow,” but as ever, we blokes were in the minority — there were only two of us. Research indicates that more…

A well-known mantra exists in the multiple sclerosis (MS) community. I first heard it after my diagnosis and have since adopted it as my own. “Move it or lose it.” Movement is essential for everyone’s health and well-being. For those of us with multiple sclerosis, it is imperative. Regular activity…

Perched atop a lift at the intersection of Main and Third streets in downtown Los Angeles, artist Lydia Emily cheerfully answered questions from a reporter 2,500 miles away via cellphone while working on a mural three stories high. Periodically, she interrupted the interview to banter with co-workers, and gawking passersby.

You may have felt what Bethanee Epifani Bryant has felt in a doctor’s office. I think many patients have, but most of us can’t paint the picture of our experiences that Bryant can paint. And she paints it using words. Bryant is a poet. “I sit on the…

FDA and EMA to Review Ozanimod as Possible Oral Therapy for Relapsing MS Another disease-modifying therapy (DMT) is a step closer to gaining approval for use both in the U.S. and in Europe. And that’s good news. The discouraging news, however, is that once again, the approval is being…

“Thank you for sharing” is a clichéd phrase I never expected to use, or indeed have used toward me! However, it is often bandied at the end of these columns by the select few who like my work, so I can’t be too churlish about it. Why write about it…

I worked up a little sweat when I was exercising the other day. It was just a tiny bit on my forehead, but it was something I hadn’t felt in many years. I’ve lived with MS since 1980, and before now, I can’t remember the last time I felt sweaty.

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 “Has anyone tried one of these cooling vests?“ from April 18, 2018. What is…

Sutter Health, a California-based healthcare group, has partnered with the biotechnology company Roche to test a new mobile app that aims to improve monitoring of symptoms in people who have multiple sclerosis (MS). The app, called Floodlight, “may give neurologists access to meaningful, actionable patient data to…

I remember the day like it was yesterday: Sept. 20, 2012. I was fortunate to receive a swift diagnosis — following a couple of tests, my neurologist told me that I have multiple sclerosis (MS). At the time I thought, “Well, let the journey begin.” My name is Stephanie…

In partnership with @Point of Care, the Multiple Sclerosis Association of America (MSAA) is offering a comprehensive educational video series about multiple sclerosis (MS). The concise, 12-part series — titled “Understanding Multiple Sclerosis” —  features neurologist and MS expert Michelle T. Fabian, MD, and covers…

Mavenclad (cladribine) may surpass Gilenya (fingolimod) in the category of oral disease-modifying therapy (DMT) of choice for the treatment of multiple sclerosis (MS) in Canada, according to a press release. The Canadian healthcare market for MS has grown considerably over the past two years. In November…

EMD Serono is supporting World MS Day, an initiative created by the Multiple Sclerosis International Federation (MSIF) to promote solidarity and raise awareness about multiple sclerosis (MS) worldwide, by joining efforts to make the disease more “visible.” Known as Merck KGaA…

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 “MS Burning Feet and Hands Could Be Erythromelalgia,” from Aug. 14, 2018.

Living with multiple sclerosis (MS) is an education in and of itself. I’ve learned a lot about myself and I am a different person now, nine years after my diagnosis. I hope to learn and grow over the next nine years as MS continues to shape my perspective on life.

The Multiple Sclerosis International Federation (MSIF) is encouraging family members, caregivers, and patients affected by multiple sclerosis (MS) to participate in World MS Day today. Created by MSIF and its members in 2009 to promote solidarity and bring hope to those affected by MS, the global initiative takes…

Biopharmaceutical company Celgene has teamed up with the Multiple Sclerosis Association of America (MSAA) to launch a new initiative called MS MindShift: A New View of MS, aimed at educating the multiple sclerosis (MS) community on brain health. Although it’s an “important topic,” brain health “is not…

Corrona has expanded its collaborative multiple sclerosis (MS) U.S. patient registry to include Genentech, the first pharmaceutical company to participate. Established in 2017, the Corrona MS Registry is a real-world U.S.-based registry, developed in collaboration with the National MS Society. Its goal is to help guide treatment decisions based on…

The other day, a young woman with multiple sclerosis (MS) shared her worry in a Facebook group that her disease would prevent her from playing with her grandchildren someday. Her concern got me thinking about how I’ve handled my MS and my grandchildren. My granddaughter is almost 5 and will…

I rode a recumbent bike for 15 minutes today. That’s a record for me, and it felt great. The bike ride was part of an overall exercise routine that I’ve set up for myself at the gym. It mirrors what I was doing about 15 years ago, when I was…

The storms keep coming. Whenever I think I will land ashore, a hurricane sends me back into the eye of the storm. I want to write; however, I fall short of time and, ultimately, the words to explicate all I am going through. Most writers have interval writer’s block. Emotional…

I’ve met Humpty Dumpty, and he is me. I made that discovery the other night when I had a bad fall. It wasn’t off a wall; it was just off a chair, but it felt like I’d tumbled off Humpty’s high ledge. It shouldn’t have happened. I’ve lived with MS…