MS Patient’s Pick of the Week’s News: Progressive Dwindling, Vitamin D, Disability Burdens, Talking with Doctors, and My MS Manager App

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Here’s my Pick of the Week’s News, from stories published on Multiple Sclerosis News Today.

Nearly 75% of MS Patients in UK Study Went Through Progressive Decline Prior to Death

Very few people living with MS or anyone close by affected by the disease can really be surprised by the findings of a new study into what is termed as “progressive dwindling.”

The study focused on one aspect of multiple sclerosis that is sometimes overlooked by researchers: the tendency over time for people with MS to become increasingly frail and dependent on caregivers, with diminished energy and heightened disability. The report, “Progressive Dwindling in Multiple Sclerosis: An Opportunity to Improve Care,”  was published July 21 in the journal PloS One.

To study progressive dwindling, the researchers obtained death certificates and clinical information on 582 MS patients in the U.K., who died between January 1998 and February 2015. Led by Jessica E. Martin of the Centre for Neuroinflammation and Neurodegeneration, Division of Brain Sciences, Imperial College London, the team tried to identify how many of these people went through progressive dwindling, as well as the factors that might predict this development.

Overall, the scientists found that 73.7 percent of the study’s patients experienced progressive dwindling before dying, going through an extended, years-long decline. A total of 72.5 percent died due to complications related to their MS. These patients commonly had more aggressive forms of MS from the disease’s onset, which occurred at an earlier age and resulted in earlier “symptom onset, progression, wheelchair use, and death,” the researchers said.

I really hope that this research has some practical use because the findings come as no surprise and, with the exception of exact percentages, could have easily been predicted by the majority of us who have the illness.

High Doses of Vitamin D Unlikely to Help MS Patients, But Daily Low Dose Good for All, UK Group Says

Conflicting evidence and opinions about the value of vitamin D supplements have contributed to a new recommendation that those of us with MS are not being advised to take them in higher doses.

The Multiple Sclerosis Trust announced that the Vitamin D working group, part of the U.K. Scientific Advisory Committee on Nutrition (SACN), has published a 300-page, comprehensive report now recommending that anyone age 4 and older take 10 μg (400 IU) of vitamin D each day  to ensure musculoskeletal health. The review, “Vitamin D and Health,” was conducted to assess whether the U.K. dietary recommendations, set in 1991, were still appropriate.

People with MS are not advised to take higher doses to treat the disease because of conflicting evidence regarding vitamin D supplements, the group said in a press release.

According to some neurologists, high doses of vitamin D supplements may be beneficial for MS patients. These neurologists recommend that patients and their family members take around 100-124 μg (4000-5000 IU) of vitamin D every day (about 10 times the daily recommended dose for the general population), but others do not agree.

Research has shown that low levels of vitamin D are associated with the risk of developing MS, disease relapses, and increased disability. However, no causal role of vitamin D in reducing the risk or severity of MS has been seen.

When living in the U.K., an MS specialist nurse did advise me to take vitamin D supplements, but I didn’t do so. Since moving to the south of Spain, there is plenty of sunshine to enable my body to create the vitamin naturally.

Increasing Disability in MS Matched by Rising Financial, Personal and Work-related Burdens

Well, who would have thought it? The more disabled MS patients are, the more they use medical services and have higher costs, the less productive they are at work, and the lower their quality of life. Astounding? Not!

These facts about multiple sclerosis patients in the U.S. are revealed in a study by researchers at Adelphi Real World and Abbvie.

The study, “Quantifying the relationship between increased disability and health care resource utilization, quality of life, work productivity, health care costs in patients with multiple sclerosis in the US,” was published in the journal BMC Health Services Research.

During the course of their disease, the majority of MS patients eventually experience some degree of functional impairment, which can affect not only their ability to live independently, but also their ability to work. Such impairments severely effect a patient’s psychosocial health and financial well-being, with dramatic changes in health-related quality of live.

Several studies have reported that increased disability in MS is associated with increased costs due to missed work days or unemployment on the one hand, and to growing needs for home modifications and mobility aids on the other, or a skilled nursing facility when disability becomes quite severe. However, most of these studies involved pre-2010 data, and new ones are required to address the current financial burden of MS, the report stated.

What? More studies are needed? Oh come on, get real. There is nothing new or earth-shattering in this study, nor would there be in the future. Research should be concentrated on finding a cure, not wasted on what I can only describe as a frivolous exercise.

There’s a Lack of Communication by Multiple Sclerosis Healthcare Providers, Study Indicates

This is interesting and potentially controversial study. I was diagnosed with MS in the UK, and feel that I was given the information I needed and plenty of opportunities to seek answers to questions I might have had. But, that is only my experience and maybe not typical.

New research from England indicates that healthcare providers do not communicate enough with their patients about the possible outcomes for their multiple sclerosis (MS).

The study, “How Do People with Multiple Sclerosis Experience Prognostic Uncertainty and Prognosis Communication? A Qualitative Study,” appeared in the journal PLoS One.

People with MS and their families may feel that there is a lack of education and information from their healthcare providers about the possible consequences of the disease. This can make it difficult to plan for the future and possibly induce stress due to uncertainty.

The research team, led by Laura Dennison of the Academic Unit of Psychology, University of Southampton in England, wanted to collect information on how healthcare providers communicate with their MS patients about the disease prognosis. The scientists asked 15 people with MS to fill out in-depth interviews, then used a technique called thematic analysis to examine the content of the interviews.

A total of six themes recurred during the interviews, including: unsatisfactory communication with healthcare providers, issues of uncertainty associated with MS-disease outcomes, and problems with accepting that uncertainty. Many patients felt confused about their future and wanted to stay focused on the present. Several participants reported that healthcare providers discussed their MS prognosis only minimally.

Clinical guidelines from the National Institute of Clinical Excellence encourage open and honest communication between healthcare providers and people with MS, although there is a lack of specific recommendations. In particular, clinicians may need further guidance and training about how to speak with MS patients about the possible long-term effects of their disease.

My MS Manager’ Named One of Best Apps for MS for 4th Year

People often say that if you need an expert on modern computer technology, just ask a child (thereby implying that older folks aren’t as good with new tech). In my case, at the age of 63, that is certainly true. I am generally fine with computers and have a smartphone, but tend not to download new apps; I just use some of the ones that were there when I first bought it.

My MS Manager has been named by as one of the best multiple sclerosis apps for the fourth consecutive year. Formerly known as MSAA Self-Care Manager, the free application for Apple iOS and Android smartphones and tablets was created by theMultiple SclerosisAssociation of America (MSAA) in a partnership with @Point of Care.

According to a MSAA news release, “Healthline editors selected this year’s winners based on user ratings, frequent updates, and overall impact in making a valuable contribution to the lives of people in the MS community.”

@Point of Care is a software platform that provides a streamlined, practice-based tool able to deliver content to caregiver’s and a clinician’s fingertips when needed, enabling better decisions, better outcomes, and better care.

The My MS Manager self-care app helps people with MS maintain their health records and find news about MS across the web. Users can also create journals and store information about relapses and symptoms, track medication schedules and any side effects, and generate charts and reports, all in aid of more effectively managing the ever-changing course of the disease. Other features include links to information resources and educational materials, and — reportedly exclusive to MS Manager — the ability to connect to the treating doctor via the app to share progress and reports.

Hmm, if it is that good, maybe I will have to download it.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Multiple Sclerosis. 


J. Lamar Freed, Psy.D. avatar

J. Lamar Freed, Psy.D.

The study on decline had significant flaws. As a retrospective study it leaves out large numbers of people with MS who died of other diseases. By restricting the subject pool the results are severely biased. What you have is a study that reveals the clinical course only of people who die of MS. This is not news to any of us in healthcare.

Darlene Nesthus avatar

Darlene Nesthus

My quality of life really s----! I hear stem cells can work with some risk. I'm willing to take that risk but only if the treatment is FDA approved. I've had MS now for 17yrs. In the past 10yrs I've become disabled to were I can't walk anymore. There needs to be more research done on MS. It's now able to get stem cells from yourself so what is the hold up?
I've had enough of this MS Darlene


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