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

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MS and progressive dwindling

A new study  focused on an aspect of multiple sclerosis (MS) that is sometimes overlooked by researchers: progressive dwindling, or 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.

Progressive dwindling was also associated with dying in the hospital rather than in other settings, such as at home.

The study also revealed that progressive dwindling is more common in people with MS than among elderly in the general population. Among older adults, 40 percent progressively dwindle before dying, compared to the 73.7 percent of MS patients in this study. In addition, only 35 percent of the general population in the U.K. die in a hospital, while among the 503 MS patients whose place of death was identified, 50.7 percent died in hospital and 25.4 percent in a care home.

Researchers noted that these results could impact care of those with MS. “We believe that better coordination of medical and social care is paramount in the years prior to death but subsequent to active treatment in [people with MS] and other populations. The results from this study provide a framework on which to base subsequent care strategies, and to target those who might benefit most from formative care,” they wrote.

Predicting those MS patients most likely to progressively dwindle could allow for different and more humane care strategies, as well as the coordination of additional medical and social services.

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  1. Lisa Scroggins says:

    How do I get my doctor to guide me away from this type of decline? I’ve had MS since at least 1991, when I was Dx. But the past 4 years have been unprecedented in terms of my decline. I try to stay active, but it’s not easy.

    • Brian Melton says:

      Sounds like you have moved to secondary progressive ms. There is only one treatment that can halt progressive ms it’s called HSCT. Best used earlier in the disease course but often works later too. Join the Facebook page.

    • Albert Matarazzo says:

      Lisa,I see my Neuro every three months.He sits at his computer asks me how I am sends me to another room for a blood test then says “see you in three months” and out the door I go. never laying a hand on me. I think it is important for each of us to make sure we eat healthy, and exercise everyday.when I question my fate I’m told ther is no way of telling.I like yourself,are on line searching all the time for well deserved answers to all my questions.I for one have come to the conclusion, we must do what we can to help ourselves. Don’t ever give in or up.I wish you well.

      • Jan-Michael Wildeman says:

        Yes! We must recognize that we know our physical emotional psychological selves better than any one including physicians we may see. We all age and have challenges. Most do not get a “name” like Multiple Sclerosis or Parkinson’s etc. I was diagnosed in 2000 and despite the very negative prognosis for my Primary progressive MS, I knew I would find ways to re-learn strengthening my arms and legs and so now at age 65, I walk, albeit with a cane or walker or use a scooter. I exercise daily, do crosswords or play scrabble on-line against a computer (Lexulous on FaceBool) and get a good nightly sleep and an afternoon nap. We can do whatever if we accept it will not be as before. I do feel a diagnosis and prognosis is something we get after our symptoms that started many years earlier often finally led to a fall or other episode. So, if we accept we lived without knowing some issues were MS, now that we know the cause, we can manage and move to other opportunities life will offer. Reading or spending quality time with family and friends while work pressures perhaps limited those opportunities. Above all, we need to set an example of mental and physical “will” for our loved ones.

  2. daan says:

    Guys, “…allow for different and more humane care strategies…” could mean assisted dying? Don’t take me wrong, but how far are they plan to go with the humane plan?

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