What symptoms contribute most to PwMS perception of health?

[SuzE-Q]

Do you agree?

Full article:
Only registered and activated users can see links., Click Here To Register...

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.

[Lazarus]

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!

[stillstANNding]

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

[Howie]

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.

[Lazarus]

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.

[Sunshine]

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.

[Virginia]

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?

[Sunshine]

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!!!!!!!

[Howie]

Virginia, I'll loan you my sister for a small fee.

[SuzE-Q]

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.

[Lazarus]

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.

Thanks for your post. Well said. Helps me articulate the problem better when others describe...

[Virginia]

Suze-Q, I am the same as you about TV. Sometime I can follow every word and at other times I just can't take it in fast enough. It's like I need to go back and listen again to get everything. I want to say "Slow Down". But of course it is me and not the people talking. I could always follow everything before my MS symptoms got worse.

[SuzE-Q]

Suze-Q, I am the same as you about TV. Sometime I can follow every word and at other times I just can't take it in fast enough. It's like I need to go back and listen again to get everything. I want to say "Slow Down". But of course it is me and not the people talking. I could always follow everything before my MS symptoms got worse.

Yes, I wonder if people are mumbling or talking faster sometimes or not articulating their words very well, or if it's just me. It's not all the time either.

Laz, nice to know I'm not alone in this. Wonder what the explanation of neural dysfunction would be to explain THIS!

[stillstANNding]

There is also something that happens in the car. I "feel" like we are going way to fast. Scary. I say, "Hon, I know this is probably wrong but I feel like we are really going too fast."

He says he will try and tells me our exact mph. It doesn't help.

It's a once in a while thing. Anybody else have it?
ANN

[agate]

Yes, and in fact the whole world just goes too fast for me.

It's particularly noticeable in situations where I'm exchanging papers and information and maybe signing or initialing some of them. That's when I'm apt to leave important cards behind or drop my keys without realizing it. Later I realize that I really didn't get what was being said. There was too much going on, too fast.

I have problems with action movies too. I don't follow what's happening.

Movies with fast snappy dialogue are difficult but those with a lot of people running around (or car chases) are the worst.