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Raynauds


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#1 summer

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Posted 01 April 2007 - 12:33 AM

Hi Everyone,
Could anyone please tell me whether they had Raynauds before or after being diagnosed.? If it was after how long did Raynauds appear after your diagnosis?
Many thanks
Celia

#2 whirlway

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Posted 01 April 2007 - 03:15 AM

Celia, I had Raynaud's at least 3 years before any dr would attempt to give me a diagnosis. Of course I had many other symptoms, but no one would actually give me a definite diagnosis. Finally, after many doctors. saying 'I don't know, wouldn't hazzard a guess, I think you need to see a shrink,' and traveling thousands of miles and seeing I don't know how many doctors, I finally got a diagnosis of lupus, which was changed about 20 years later, with sclero as my primary, and lupus, Raynaud's, sjogrens, fibro, hyperthroidism, etc, etc, etc. as secondary.

#3 Margaret

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Posted 01 April 2007 - 06:30 AM

Hi Celia ,

Gareth does not have Raynaud's symptoms......yet. He's got esophageal and lung issues and positive blood work for scleroderma.
Take care, Everyone.
Margaret

#4 janey

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Posted 01 April 2007 - 08:12 AM

Celia,
I developed Raynaud's 6 months prior to diagnosis and about 4 months after being diagnosed with mild carpal.

Big Hugs, Janey

#5 Clementine

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Posted 01 April 2007 - 08:30 AM

I had Raynaud's about ten years before I got a diagnosis. I had GERD and anemia for several years too. Unfortunately, I did not have any clue it could be Scleroderma, so I was not diagnosed until two years ago when I had shortness of breath, and it had progressed to my lungs.
Jen

#6 nan

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Posted 01 April 2007 - 11:09 AM

Celia,
I have had Raynaud's for 9 years and I was just diagnosis in December with scleroderma.
Nan

#7 Sarahp

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Posted 01 April 2007 - 11:26 AM

I was diagnosis with Lupus 25 years ago. The first symptom I had was Raynaud's. The Raynaud's began while I was pregnant. After the pregnancy the Lupus symptoms began and I was sent to a rheumatologist who diagnosis Lupus.

All during this time rheumatologist said my fingers showed signs of CREST. I had a positive RNP and high ANA 1:1280 so was told I had MCTD.

18 months ago my new rheumatologist gave me the diagnosis of Lupus with an overlap of limited Scleroderma. I have the dsDNA which is specific for Lupus.

Sarah

#8 Sweet

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Posted 01 April 2007 - 11:51 AM

I've had Raynauds since I was a child. I wasn't diagnosed until I was 40.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 barefut

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Posted 01 April 2007 - 06:27 PM

Raynaud's started about a year before sclero diagnosis.

#10 summer

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Posted 02 April 2007 - 01:25 AM

Hi Everyone,
Thanks for replying to my post. One thing that I have noticed is that nearly all of you had Raynaud's before any symptoms of Sclero appeared. Mine is the opposite I have been diagnosed with Limited / Crest Sclero and Raynauds still hasn't appeared!!. And yet I have read to be diagnosed with Crest/Limited Sclero you apparently usually have had Raynauds for years/months before any symptoms of Sclero .

Thanks once again
Celia