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Old 09-09-2017, 01:53 PM
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Default Which symptoms contribute the most to patients’ perception of health in MS?

Agree or disagree with the latest research findings? What makes you feel most disabled? - D

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 well being than physical disability, and challenge the notion that physical disability should be the primary outcome measure in multiple sclerosis.

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Old 09-13-2017, 09:00 PM
GoatHerder GoatHerder is offline
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Default Interesting

For me, it's the pain.

The fact that I'm in a wheelchair doesn't bother me at all. Indeed, when people see me getting around, flipping items from the top shelf at the grocery, using my cane, directly into the basket; I feel quite good about myself.

I have other disabilities, including a colostomy, but even that doesn't make me feel disabled. It's just a thing.

The fatigue, I just do what I can, when I can, and sleep when I need to. If I'm too tired to work on the farm, I lay in front of my computer and work on my web sites.

But pain, that gets me. I refuse to take meds for it, as I really dislike the disconnected feeling I get when on them. So, I push through the pain when I can, sleep it off when I can't
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Old 09-14-2017, 09:05 PM
Sparky10 Sparky10 is offline
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For me, it's gait dysfunction and fatigue. One is not a invisible; it's obvious. Fatigue makes the gait worse.

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

I think the invisible symptoms would be more frustrating. Hard to describe, hard to make others believe they exist. Does that mean I agree with the findings? I'm confused on that.
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Old 09-15-2017, 08:22 PM
GoatHerder GoatHerder is offline
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Quote:
Originally Posted by Sparky10 View Post
For me, it's gait dysfunction and fatigue. One is not a invisible; it's obvious. Fatigue makes the gait worse.
When I was still walking, with a cane. I got out of my truck to head into a store to grab a sub for lunch. It was about 6pm, and a law officer, after watching me walk for a bit, came up and accused me of drunk driving! Fortunately, this guy had a working brain, and when I told him I had MS he felt bad, told me to have a good evening. Gait was my largest gripe before I lost the ability to walk!
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