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Raynauds

10 posts in this topic

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

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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.

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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

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Celia,

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

 

Big Hugs, Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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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

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Celia,

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

Nan

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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

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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

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