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Crest Syndrome?

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6 replies to this topic

#1 MrsZeke



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Posted 15 August 2007 - 09:48 AM

Hi. I am new here so I will give you a quick summary. I am a 40 year old mother of 2. I have been married for 5 years. I went to my doctor about 6 weeks ago. He sent me to a rheumatologist because he thought I had RA. The rheumatologist took lots of blood and xrayed every joint in my body. He then sent me for an echo of my heart and a pulmonary?(lung) test. He has now told me that I have Crest Syndrome. I feel very lost and confused. I really don't know what this is, what it does or what I can do about it. My rheumatologist explained it (sort of) but I guess it went over my head or maybe I just didn't want to hear it. But the things he told me, that I remember, didn't really sound bad, but I have started looking it up on the internet and it sounds alot more serious than he made it out to be. So now I am confused and scared about what comes next. Any help or information I can get will be greatly appreciated.

#2 nan


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Posted 15 August 2007 - 10:30 AM

Welcome to the forum! You have come to the right place for support and information. I am sorry about your latest diagnosis. I too have CREST without the S. Did the doctor tell you the results of your PFT's and echocardiogram? Feel free to private message or email me if you have any questions. Take care of yourself!

#3 janey


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Posted 15 August 2007 - 03:14 PM

Welcome to the Forum! I'm sorry you are here due to your recent diagnosis of CREST, but you have come to the right place for support and information. Many of our members have CREST so I'm sure you'll hear from more. If you have specific questions, please ask. Someone will have an answer for you.

We do have a page on CREST that has lots of the latest research and links to websites for general information. Please visit it. I think you'll find some valuable information about CREST.

Please keep up informed on how you are doing and updates on office visits and tests. Hope you post often. Welcome!

Big Hugs,

Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 jefa


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Posted 15 August 2007 - 09:02 PM

Hello, MrsZeke. Let me add my welcome to the ISN Sclero Forums. My path started with presumed RA, as well. It is all a bit confusing at first, especially if you read the wrong articles to start with (as I did). This is a great site for reading - start with the excellent links you have been given then, try to add something new every day. You will find comfort posting on the forum along side of those who are also just getting to know about the disease and those who are becoming experts through long experience. Hugs to you.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#5 tintin


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Posted 16 August 2007 - 05:06 AM

Hi MisZeke,

I have also been recently diagnosed with what my Dr. thinks is early CREST. If you can post your lab results and symptoms (anything you think might be related) you will find the people here very helpful. This disease varies a lot in both its effects and the severity of those effects. There are also treatments that can help.

Take care and stay positive
keep on smiling


#6 Sweet


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Posted 16 August 2007 - 06:23 AM

Hi MrsZeke,

Welcome to the sclero forums. I'm sorry about your diagnosis of CREST. I know at first it can be very scary and cause a lot of confusion however, the more information you take in, the better you'll feel about it. Janey gave you a great link, take a look at it, throw questions out to us and we'll help you through it.

One day at a time my friend.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#7 WestCoast1


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Posted 16 August 2007 - 06:34 AM

Hello MrsZeke,
You have already received some great links and advice, so I just wanted to say welcome, welcome, welcome!