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Systemic Sclerosis Score


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#1 beanie

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Posted 22 April 2009 - 01:12 AM

I had an evaluation with a new rheumatologist last part of December and my pulmonary doctor received a copy of the evaluation but my rheumatologist didn't, so I asked for a copy to take to my my rheumatologist appointment next week. Of course, I read through the report from the new doctor. Some things I don't understand. Maybe you all can interpret for me :)

1st. My systemic score is 8, 1+ in my face, bilateral hands, bilateral forearms, torso and both feet. Do you all know what yours is and what is high/low?

2nd. In his impressions he listed parotid enlargement and suggested checking SSA and SSB. Anyone know what these tests are?

3rd. In his impressions he suggested a Schirmer test and necessary staining for sicca symptoms. What is sicca and what is the test mentioned?

I will find out more on May 1st when I see my regular rheumatologist. Just wanted your input.

Thanks,
Michelle

#2 mando621

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Posted 22 April 2009 - 03:55 AM

Hi Beanie,

I don't know much about the first question you had.

Sicca syndrome refers to dryness of eyes, mouth, anywhere you produce moisture. SSA and SSB are the antibodies that often determine if you have the autoimmune disorder Sjogrens. The Schirmer (possible different spelling schmirr) is a test where they put a small strip of paper in your eye to see how much moisture your eyes are producing. A normal person would flood the paper with tears, (the paper is quite irritating). A person with sicca or Sjogren's will not produce tears, an abnormal reading is something less than 6 or 7mm of wetness. Mine were 4mm and 5mm, one of the papers even stuck to my left eye.

So far that is the only official diagnosis I have. I use Restasis drops and they help a great deal.

Best wishes getting this sorted out.

Mando.

#3 GocartMoz

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Posted 22 April 2009 - 04:17 AM

I am not certain Michelle, but I am guessing that "systemic score" most likely referred to what is technically known as the Rodnan skin score. This is where the tester pinches your skin at 17 different locations of your body and assigns a score based on tightness of the skin. A 0 is zormal and a 3 is the highest score for tightness. As such, the worst score is a 51 and a 0 is normal. An 8 would be on the lower end of the score. It is somewhat of a subjective test, based upon the tester. As such, in order to accurately determine worsening or improvement the test should be done consistently by the same doctor. If you recall your rheumatologist trying to pinch various areas of your skin, that is most likely what the "systemic score" means. Just a guess, but I think a pretty good one. If you figure you received a score of 1 for your face, 1 for each hand, 1 for the torso, 1 for each foot, and 1 for each forearm that would equal an 8. As for the second two points, I am unsure ... but will try to do some checking for you.

#4 beanie

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Posted 24 April 2009 - 12:46 AM

Thanks for the replies. Mando, for the film test, did they give you any kind of sedative for anything prior? I would think that would be hard to do.

Thanks,
Michelle

#5 mando621

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Posted 24 April 2009 - 03:27 PM

I've had the test twice. Once without any anesthetic and once with drops to numb the eye. It wasn't fun, but it wasn't as bad as other tests have been.

It was the test with the drops where my eye didn't water with the paper in it at all, and it stuck to my eye.

So far, I haven't had the lip biopsy like the doctors would like me to. I have symptoms like the dry eye and mouth, (dry everywhere actually) but no antibody markers so far. That isn't unusual as I understand 60-70 % do, which leaves 40-30% without the markers. I just had blood tests ordered to test again. The original eye doctor said it was Sjogren's, but other doctors want the biopsy or the blood markers to declare it as a diagnosis. Since they wouldn't do much about it that isn't already being done, I figure I don't need the biopsy.

It was nice to have actual physical evidence that this wasn't my imagination, so don't be afraid of the test. Even without the lip biopsy, I do have the sicca diagnosis which means dry.

Mando.