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Preliminary criteria for the very early diagnosis of systemic sclerosis


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#1 Jeannie McClelland

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Posted 02 December 2010 - 03:38 PM

Preliminary criteria for the very early diagnosis of systemic sclerosis: results of a Delphi Consensus Study from EULAR Scleroderma Trials and Research Group. Physicians from 85 EUSTAR centres collapsed 121 items into three domains containing seven items, developed as follows: skin domain (puffy fingers/puffy swollen digits turning into sclerodactily); vascular domain (Raynaud's phenomenon, abnormal capillaroscopy with scleroderma pattern) and laboratory domain (antinuclear, anticentromere and antitopoisomerase-I antibodies). Avouac J (PubMed) Ann rheumatologist Dis. 2010 Nov 15. (Also see: Diagnosis of Scleroderma)

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Jeannie McClelland
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International Scleroderma Network

#2 mando621

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Posted 03 December 2010 - 07:23 AM

Hi,

I'm rather disappointed with these results actually. These are some of the things that my rheumatologist is looking for to classify me with scleroderma. This totally disregards early esophageal issues, heart arryhthmia, dry eye/sicca syndrome, mouth shrinkage, and on and on....

Since I don't have antibodies, and my fingers are still in the puffy in the morning phase, I guess I only meet one criteria of this study.

Well, off to my primary care appointment this afternoon where I'm going to see about getting a referral to specialist since I've changed insurance. Wish me luck.

Mando.

#3 Jeannie McClelland

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Posted 03 December 2010 - 10:27 AM

Hi Mando,

I think these criteria are meant to indicate the very earliest signs of possible systemic sclerosis. As we all know, not everybody gets diagnosed in what could be considered a timely manner, even when they have the symptoms that satisfy the long list of criteria as established by the American College of Rheumatology, but with your mounting list of symptoms, I would think and hope that you'll have a diagnosis soon.

I know I have mentioned before that I'd seen a rheumatologist about 2 years before I got my diagnosis. At that time I was positive for puffy fingers, telangiectasia, livedo, ANA and ACA, plus had horrible GERD and shortness of breath. Joint and muscle pain, too. He told me I didn't have anything and didn't need to worry as I was unlikely to develop anything. Of course 2 years later, I was diagnosed with systemic sclerosis and already had pulmonary fibrosis and pulmonary hypertension. The first doctor had only ordered blood work and a urinalysis. My primary physician was convinced I had asthma~

Don't give up hope of a diagnosis. You're on the right track doing what it takes to see a scleroderma expert. Good luck and I have my fingers crossed!

Warm wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network