Living with MS

It’s 1 p.m. in the U.K., and it’s 90 degrees Fahrenheit. I can hardly move due to the heat. My left hand is typing this. The rest of my body has shut down. Tomorrow is forecast to be the hottest July day in recorded history in the U.K. I had set…

Living with multiple sclerosis (MS) is a process of loss — of mobility, brain function, and independence. We can lose relationships and jobs. For most of us, these losses are forever. A woman who commented today on a column I wrote a few weeks ago said that she is…

Celgene and the Multiple Sclerosis Association of America (MSAA) are working together to bring the “MS MindShift: A New View of MS” campaign, which is raising awareness about the importance of brain health in multiple sclerosis (MS), to the 37th Annual QuickChek New Jersey Festival of Ballooning in Readington,…

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 “How Occupational Therapy Is Improving My MS Home Life” from April 15, 2018.

People whose advanced progressive multiple sclerosis (MS) limits their mobility can strengthen their lower limbs and improve life quality by engaging in regular standing exercises in their homes, a U.K. study into physiotherapy programs for this patient group reports. The study, “Assessment…

Urinary tract infections (UTIs) are a problem for a significant number of people with multiple sclerosis (MS). As many as three in 10 may wind up needing treatment for one. So, I was concerned when I read a New York Times article reporting that UTIs are becoming harder…

Have you ever read something and thought, “This is me, this is my MS”? It happened to me today as I read a post by Rachel Horne on the BartsMS blog. Horne writes about how some of us adapt to our MS diagnosis better, or at least…

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 “How I Manage Stress With MS” from July 10, 2018. Whether physical, psychological, or…

There is nothing worse than being diagnosed with a disorder that you know nothing about. While it was extremely difficult for me to take in, my parents also were affected. I had never thought about how my parents felt about my multiple sclerosis (MS) diagnosis and what I have…

Does your doctor consider what you’ll have to pay when prescribing your medications? A few months ago, I wrote that some people are skipping doses of their meds because they can’t afford their out-of-pocket costs. In that column, one of the suggested solutions was to talk to…

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 forums. This week’s question is inspired by the forum topic “Do Noise and Crowds Tend to Negatively Affect You More with MS?”…

The glow of the fireworks bathes the surrounding trees. A kaleidoscope of blue, yellow, and red illuminates the night sky. It is a day of picnics, parades, and pyrotechnics. It is the Fourth of July, when Americans celebrate gaining their independence from Great Britain. I can relate to celebrating…

I love to travel and see new sights, but my multiple sclerosis (MS) mobility problems present particular challenges. Over time I have accumulated my own set of travel tips. Perhaps some of the following might make your next trip easier. Airline travel My trips almost always involve airline…

This summer marks three years since the Multiple Sclerosis Association of America (MSAA) launched its free online forum, designed to support, inform, and uplift members of the multiple sclerosis community. The organization encourages all affected by MS to make use of this resource. Called My MSAA Community, the platform…

Last night in bed, my calf muscles started cramping. Again. Usually, it’s just my left leg, but last night it was both. The pain wouldn’t ease with my usual stretching routine so I reached for my little bottle of cannabidiol (CBD) oil. I’ve been experimenting with CBD oil…

Legos, it seems, are more than just a kids’ toy. People with some neurological conditions, including multiple sclerosis (MS), are using those little, colored building blocks to build better lives for themselves. An article in the latest issue of Brain & Life uses Kathleen Jordan as one example. Jordan,…

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, “How Chiropractic Therapy Can Help Multiple Sclerosis Patients,” from June 1, 2018.

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…

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…

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…