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Recently Diagnosed With Crest


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#1 kristi

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Posted 09 May 2007 - 05:17 AM

Hi, my name is Kristi. I was just diagnosis with CREST. My sister has LUPUS (involving kidneys) and after participating in a LUPUS genetic study for her, they found a high positive ANA in me.

I went to my general practitioner and they did another ANA and it was negative. I went to a Rheumatologist and she told me they have to specifically ask for the anticentromere pattern of ANA or they will not test for this rare pattern and that is why I got the negative result the second time.

The rheumatologist repeated the ANA once more on me, specifically asking for the centromere pattern and it came back with a high positive of 1:1,280. She diagnosed me with CREST due to my raynauds and daily severe heart burn. I also have the beginning skin changes on my fingers. She ordered the lung PFT, Echocardiogram heart test and a Barrium swallow to check the condition of my esophagus. She thinks it is limited, not diffuse, so I guess I am lucky there.

Any advice or encouragement is welcome.

Thanks,
Kristi

#2 jefa

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Posted 09 May 2007 - 06:17 AM

Welcome to the Forums, Kristi. I am sorry to hear of your recent diagnosis of scleroderma, but glad you landed in such a great place for information. The members of this forum are very good about sharing and giving advice and the site itself is full of excellent information. For starters you can read this link on CREST which should answer a lot of questions.

Sorry about your sister's lupus, but at least you were able to find our about your own illness. You are lucky to have quickly found a rheumatologist who is on your side.


Warm wishes,
Jefa

Carrie Maddoux
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#3 CFMBabs

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Posted 09 May 2007 - 06:21 AM

Hi Kristi,

 

Welcome to the CREST Club! I imagine you already know what CREST stands for and you don't need all 5 presentations to qualify. I started with just R, E, S and T so I had REST ( Raynauds, Esophageal invovement, Sclerodactily and Telangeactasia) If this sounds like gobble-de-gook to you -- well, join the club!

 

I'm sure you will receive oodles of support here as there are many on this site with CREST, and by the way it is a limited form of scleroderma known as Limited Cutaneous Systemic Sclerosis -- it's very posh name.

I've had the condition for many years. To say it hasn't worsened wouldn't be strictly true, however progression has been slow and now it seems to have reached a plateu. I'm hoping that this is as far as it will go but I'll cope no matter what.

 

Please try not to worry, you are very much amongst friends here and if you think you may be experiencing something totally outrageous -- I'd like to bet someone has had it here too.

My very best wishes to you,

 

Barbs



#4 Sweet

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Posted 09 May 2007 - 06:55 AM

Hi Kristi,

Welcome to the Sclero Forums. I'm sorry you have been diagnosed with CREST. I too have CREST as well as Lupus. You will find a lot of support, information and good friends here. We'll help you along the way with anything you need.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Shelley Ensz

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Posted 09 May 2007 - 10:18 AM

Hello Kristi,

Welcome to Sclero Forums. I'm very glad you found us, and we all look forward to getting to know you better.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 kiwimum03

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Posted 09 May 2007 - 10:23 AM

Welcome Kristi!

it sounds like you have a good rheumatologist and you will also find a lot of support and information on here.

Big hugs,
Irene

#7 Clementine

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Posted 09 May 2007 - 11:21 AM

Hi Kristi,

 

I am sorry you were diagnosed with CREST. It will be interesting to know how your echo and pulmonary lung functioning tests are. Please let us know. When will you have these tests? Try not to stress out too much. The fact that you found out before you were really hit hard with it is a good sign.

Take care and it's nice to meet you.

 

Jennifer



#8 Sam

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Posted 09 May 2007 - 11:27 AM

Kristi, hi! I too have CREST and other stuff. too many to mention. Glad to see you found this site. A lot of good information and friends on here.


Sam

#9 janey

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Posted 10 May 2007 - 03:29 AM

Kristi,
Welcome Darlin'! I'm sorry you've joined us due to your recent diagnosis, but I'm sure you've already discovered it's a great place - lots of experiences and information. Sorry to read that your sister also has another one of these nasty connective tissue diseases.

I see that Jefa has provided our link to CREST. In your message you mentioned that you are still being evaluated for limited or diffuse. All three of these are a form of systemic scleroderma and exhibit similar, but some difference features. Here are the ISN links to Limited scleroderma and diffuse scleroderma. Of course as many of us have discovered, there are discrepancies and overlaps in the descriptions of each. For example, my rheumatologist has given up on trying to figure out if I have limited or diffuse, so we just call it systemic.

Glad to see that you are using a rheumatologist and that he is taking good care of you by running the standard tests to see what is and what isn't involved. With this disease it's always good to catch things early with periodic testing. Please let us know how you tests turn out. Look forward to hearing more about you.

Big Hugs,


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

#10 WestCoast1

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Posted 10 May 2007 - 04:38 AM

Welcome Kristi,

 

I am sorry to hear that you have not been feeling well. It sounds like your rheumatologist is taking the appropriate steps to help you get the correct treatment.

Please keep us informed as to how you are doing!


*WestCoast*

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#11 LisaNC

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Posted 10 May 2007 - 11:25 AM

Welcome Kristi,

 

I have been a member of the crest club since 1987. I am glad this resource of information is here for you as this did not exist when I was diagnosed. I have learned so much about this disease on this site. For example, I had no idea dental issues could be scleroderma related. I feel I have had pretty smooth sailing these past 20 years. I feel pretty good. Don't let some of this information scare you. No one can predict the course of this disease. Be the most informed that you can!

 

Scleroderma sister,

 

Lisa



#12 jefa

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Posted 10 May 2007 - 09:36 PM

Welcome to the Forums, Lisa. Glad you found us. As a veteran sufferer, I am sure you will be a valuable contributor and a positive inspiration for us all. I am also experiencing the impact of dental difficulties as a result of the illness.
Warm wishes,
Jefa

Carrie Maddoux
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#13 relicmom1

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Posted 11 May 2007 - 12:34 AM

Welcolm Kristi!! I am a little behind times welcoming you..lol I always seem to bringing up the rear :P . As everyone has said, you will find wonderful people here and any type of support you need. Everyone here is very compassionate and understanding because we all are in the same boat, but on different levels. I have CREST also with alot of it's ugly complications. I've learned to take it one day at a time. I have a very supportive family (husband of 28 years, son age 22 and his fiance' and a daughter age 17) My adult son still lives at home and helps out alot. I must admit there are days I feel smothered and would rather be left home alone (and some days I get that :) ) The best advice I can give is to pay attention to your body, it will let you know if "today is a bad day or good day" That was the hardest thing for me to do because I have always been so active and never rested like I should. Well, it got to the point where I didn't have a choice. I didn't listen to my body and kept pushing on and it went on strike..lol. Now I take one day at a time and I have two mottos: It ain't nothing but a thing and this too shall pass. Hang in there and know everyone is here if you need us!
Peace :)
Barbara aka relicmom1

#14 kristi

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Posted 11 May 2007 - 02:17 PM

WOW! Thank you all so much for the warm welcome! It is sad yet it feels good to know that there are people going through all of this with me. When you tell people that you have CREST syndrome or scleroderma, they have absolutely no clue what you are talking about. People don't even know what autoimmune disease or connective tissue disorder means.

By the way my PFT, echo & barrium swallow is Thursday the 17th. I will post my results when I get them.

Kristi :)

#15 nan

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Posted 12 May 2007 - 09:35 AM

Kristi,

 

I too have CREST. I also have Sjogren's and Fibromyalgia. You have come to the right place for knowledge and support. I will be thinking of you on the 17th.

 

Nan