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Thread: What symptoms contribute most to PwMS perception of health?

  1. #1
    Distinguished Community Member SuzE-Q's Avatar
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    Default What symptoms contribute most to PwMS perception of health?

    Do you agree?

    Full article:
    http://journals.sagepub.com/doi/10.1...55217317728301

    Which symptoms contribute the most to patients’ perception of health in multiple sclerosis?

    Rivka Green, Gary Cutter, Michael Friendly ...
    First Published September 5, 2017

    Abstract
    Background
    Multiple sclerosis is a polysymptomatic disease. Little is known about relative contributions of the different multiple sclerosis symptoms to self-perception of health.

    Objectives
    To investigate the relationship between symptom severity in 11 domains affected by multiple sclerosis and self-rated health.

    Methods
    Multiple sclerosis patients in two multiple sclerosis centers assessed self-rated health with a validated instrument and symptom burden with symptoMScreen, a validated battery of Likert scales for 11 domains commonly affected by multiple sclerosis.

    Pearson correlations and multivariate linear regressions were used to investigate the relationship between symptoMScreen scores and self-rated health.

    Results
    Among 1865 multiple sclerosis outpatients (68% women, 78% with relapsing–remitting multiple sclerosis, mean age 46.38 ± 12.47 years, disease duration 13.43 ± 10.04 years), average self-rated health score was 2.30 (‘moderate to good’).

    Symptom burden (composite symptoMScreen score) highly correlated with self-rated health (r = 0.68, P < 0.0001) as did each of the symptoMScreen domain subscores. In regression analysis, pain (t = 7.00), ambulation (t = 6.91), and fatigue (t = 5.85) contributed the highest amount of variance in self-rated health (P < 0.001).

    Conclusions
    Pain contributed the most to multiple sclerosis outpatients’ perception of health, followed by gait dysfunction and fatigue.

    These findings suggest that ‘invisible disability’ may be more important to patients’ sense of wellbeing than physical disability, and challenge the notion that physical disability should be the primary outcome measure in multiple sclerosis.

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    Distinguished Community Member Lazarus's Avatar
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    Yes! My invisible symptoms are so severe that I can cry. But even friends who know that my MS is seriously affecting me are able to not notice how much distress I am in. If those friends can not see obvious disability they think I am doing fine.

    But those symptoms that do not show are exquisitely painful. Most of the time when I am moving my head is misfiring so badly I want to cover it with my hands. I am always asking my husband to talk softer and slower especially when we have finished a farm job and while we are doing the work it is painful if he talks. Hard to describe the pain but it is awful and a big part of how I perceive the state of my MS.

    Heaven knows what I just wrote but you touched some nerve with this article!
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Oh, Linda, I am glad you posted. I have had to ask Peter to please talk softer and more slowly because words were hitting me in the head like stones!

    There are two of us, who knew?
    ANN
    There comes a time when silence is betrayal.- MLK

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    Distinguished Community Member Howie's Avatar
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    One event that really made me wish everyone would talk softer and slower was Thanksgiving at my sister's house. It was packed with folks I didn't know, and my sister's hubby, and kids and grandkids.

    When it was over, I tried to explain to my sister, how it was for me, and that I wouldn't be joining family festivities again. The great thing is, she understands my MS probably better than anyone else in my family.
    Roswell was a gift.

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    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by stillstANNding View Post
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    Oh, Linda, I am glad you posted. I have had to ask Peter to please talk softer and more slowly because words were hitting me in the head like stones!

    There are two of us, who knew?
    ANN
    Perfect description. The stones reflect the pain I was trying to describe. Thanks for the figurative language.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member BBS1951's Avatar
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    The SPS causes thee symptoms in me since May. It makes it hard to be around people. I had to train a friend to talk softly, slowly, and less animated. I prefer to sit in silence. Movies and TV are impossible now.

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    I dread family Christmas because I have a hard time following everyone at once. Sometimes when just 4 or 5 of us go to dinner I have that problem. Mine seems to come in spirts. There are times when I just want to sit and be left alone and other times when I get lonely and would enjoy talking to someone, but I always want it to be someone who understands where I am coming from, and where do you find those people?
    Virginia

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    Distinguished Community Member BBS1951's Avatar
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    Quote Originally Posted by Virginia View Post
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    I dread family Christmas because I have a hard time following everyone at once. Sometimes when just 4 or 5 of us go to dinner I have that problem. Mine seems to come in spirts. There are times when I just want to sit and be left alone and other times when I get lonely and would enjoy talking to someone, but I always want it to be someone who understands where I am coming from, and where do you find those people?
    Here!!!!!!!

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    Distinguished Community Member Howie's Avatar
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    Virginia, I'll loan you my sister for a small fee.
    Roswell was a gift.

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    Distinguished Community Member SuzE-Q's Avatar
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    I also experience the same, people talk too loud and too fast. It's like cymbals being clashed right next to my ears. I even find myself rewinding the tv again and again to catch everything that's being said. Thank goodness for pvrs that allow for this now!

    I have to watch too and not just listen in order to combine lipreading with hearing it to aid in comprehending what's being said. No more multitasking while watching tv!

    Funny how almost every other symptom is a decrease in some function, this is a heightened sense. Of course, spasticity too is also an exaggeration of a function, not a loss.

    I think all 3 though are very close to being equally important to my perception of health, but these are the same 3 for me too.
    Last edited by SuzE-Q; 09-13-2017 at 03:16 PM.

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