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How do you know if you have Crest?


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#1 chockers

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Posted 14 January 2011 - 02:31 AM

Hi Folks.

I have scleroderma overlap with Rheumatoid Arthritis. I am well controlled.

I got a copy of my bloods for insurance reasons and to fly out and I see on there they are testing me for CREST though I've not been told yet. Guess they might be still testing me?

I have Raynaud's, Calcinosis, little red spots, heart burn, tight skin on face and scalp, Irritable Bowel Syndrome as well as the R.A. (very little joint damage.)

So how do you know you have it ?

I guess I might have.

Christine.

#2 Joelf

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Posted 14 January 2011 - 03:14 AM

Hi Chockers

We do have a link here regarding CREST aka Limited Sclero which I hope you will find informative but the best idea is to consult a Scleroderma specialist, if you haven't already done so. They are in the best position to advise you as sadly many rheumatologists do not have the expertise to deal with this very complex disease.

Do post again and let us know how you get on.

Jo Frowde
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#3 debonair susie

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Posted 14 January 2011 - 05:44 AM

Hi chockers,

Joelf posted a great link for you to peruse.
I actually have the "REST" of CREST, in that I have all but the Calcinosis, with my symptoms.
Raynauds is the R; Esosophageal Reflux Disease is the E; Sclerydactyly is the S, and Tangelasia is the T.

So, your doctors sound very proficient and I'm glad you have them on your team!
Keep us posted and thank you for your post! :)
Special Hugs,

Susie Kraft
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#4 chockers

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Posted 14 January 2011 - 06:59 AM

Well I have faith in my rheumatologist as he once worked at the Royal Free in London and has seen a lot of Scleroderma.
I would have good care if I needed it ....

I am lucky to have him even if I don't know what type of Scleroderma. I know why, it's because when I went to get diagnosis for the R.A I took a list. I had started to get white fingers and remembered to tell them most things. Then I had a blood test, the new type of blood tests which pick up everything plus Scleroderma. So then I hardly knew I had it .

Four years on you can see I have scleroderma slightly .Things now have moved on a bit. They have been testing me for this and that
with the dermatologlist and rheumatologist together. So likely that's why I found tests had been sent on to the other hospital for testing on the blood form so I guess I have Crest. Will ask next time.

I was letting them tell me as I guess they will test me a few times to make sure? I have the signs I have it.

love Christine

#5 Amanda Thorpe

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Posted 19 January 2011 - 04:46 PM

Hello Christine

CREST stands for Calcinosis, Raynaud's, Eosophageal problems, Sclerodactyly and Telangiectasia. From what you have said it sounds like you have the C,R,E and T of CREST aka limited scleroderma. The diffuse form of the disease is very fast moving whereas the limited form can progress more slowly, either way both are systemic forms of the disease.

Take care and keep posting.
Amanda Thorpe
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#6 chockers

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Posted 20 March 2011 - 03:30 PM

They say I don't have it, ha ha. Well now they do. I have scleroderma mild R.A MILD and overlaps mild. But I don't care I am alive. christine :emoticons-group-hug: :emoticons-line-dance:

#7 Amanda Thorpe

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Posted 21 March 2011 - 02:58 PM

Welcome to your CREST diagnosis Christine!! :emoticon-congratulations:

Take care and keep posting.
Amanda Thorpe
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#8 chockers

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Posted 22 March 2011 - 02:57 PM

Hi folks

Well my nurse says I don't have crest and my rheumatologist says there's no such thing as crest or limited, he worked at Royal Free, so what ever I have he will be an expert as he would had seen it.

Today I had to ring the Raynaud's and Scleroderma people because (sorry no-one answered) my calcinosis popped - it grew over night and started to pop out of the skin, with a load of liquid calcium (white stuff). The Raynaud's and Scleroderma lady (Ann) had just done a survey on them and knew what to tell me to do. I ordered some antibiotic cream from the chemist (forgot the name) and I am keeping it dry and covered.

It was the biggest the nurse had ever seen, I went to the connective tissue nurse on Friday. Today I rang our help line but the nurse (mainley R.A.) rang back - go to doctors. That would had been totally useless as it just looks like a scab or a hole, but I can see the core inside. And doctors just don't know they have never seen them. So I have my finger covered but its comfy as using the right stuff.

Anyway that's me today.

ha ha ha ha

Christine

#9 Jeannie McClelland

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Posted 22 March 2011 - 04:19 PM

Hi Christine,

I'm glad your lump popped OK. That makes it hurt less, right? Sounds like you are doing all the right things for the spot where it was, no use getting an infection! Now here's hoping that you don't ever have another one and whatever they want to call the disease variety you have, that it takes it easy on you.

Warm hugs,
Jeannie McClelland
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