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Do I have CREST?

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#1 JoJam1980



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Posted 16 April 2013 - 11:53 AM

Hi all, don't know if anyone will be able to help me.

I've been diagnosed with CREST syndrome following very high ANA centromere pattern (1:2560). Have had lung function tests, echocardigram, liver and kidney scans and all have come back within normal limits. Apart from this high blood test, I have NO symptoms that fit with the diagnosis.

Symptoms I have are general fatigue (put that down to busy job, and being on the go for 10-14 hours every day), aching back, shoulders, and more recently painful hips. (again, presume this is from sitting poorly at my desk as I keep getting up and down) Having looked at the Arthritis website, I suffer pain on the squeeze tests in left foot and right hand, but other than that, can't say I notice anything in particular. I have a touch of carpal tunnel in right arm, and use a wrist support, which I believe is more to do with RSI than any autoimmune disease. Research I've done online points more towards Rheumatoid arthritis, than CREST.

The Rheumatologist isn't putting me on any medication, and wants to repeat bloods in 6 - 12 months, or IF i get symptoms of Raynauds.

She's also said I have sticky blood, and this may be a symptom of lupus, but only did 1 of the 2 blood tests needed to diagnose Lupus, and doesn't feel there will be any benefit in this diagnosis.

Should I take this as an actual diagnosis or wait and see if I develop symptoms? Has anyone else ever been diagnosed without symptoms based purely on blood tests? Reading the site, it looks like I need a second opinion before I take a diagnosis - this has all happened within 4 weeks (I've got private medical insurance)

Anyone able to give me some guidance or information?

Many thanks in advance!

#2 judyt


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Posted 16 April 2013 - 03:30 PM

Hi Jojam,


Welcome to this site, it is a good place the get help and information but none of us are actually medically trained.


From what you have said, it would seem that maybe you are one of those who has positive blood tests and no symptoms.   I remember my first test which came back with Anticentromere 1:1280 and the comment 'compare symptoms to confirm diagnosis'.   That is really what it is all about, unless you have at least some of the CREST symptoms you will possibly never develop the full disease.   On the other hand we have members on this site who have blood tests in normal range and obvious severe symptoms.


Your Doctor is very likely to be right and if you have had all those scans and investigations and nothing has turned up outside normal range then an awareness of the possibility is probably all you need.


Best wishes


#3 Joelf


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Posted 17 April 2013 - 12:17 PM

Hi JoJam,


Welcome to these forums!


As Judy has pointed out, none of us are medically trained (although I do have a now out of date first aid certificate which is handy should I come across anyone in the middle of having a heart attack or needing broken bones strapped up. ;) ) However, it's certainly possible to have positive blood tests for Scleroderma and yet never develop the full blown disease and vice versa as Amanda and other members can testify. Also some of the symptoms for scleroderma can apply to other health problems and I know how easy it is to make symptoms fit the disease. Before I was diagnosed with Scleroderma I convinced myself I had Idiopathic Pulmonary Fibrosis, having foolishly googled it and frightened myself witless!! :rolleyes:  I've included a link to our medical page on CREST (the former name for Limited Systemic Scleroderma) to give you some more information. I'm afraid that a lot of the diagnosis of Scleroderma does depend on wait-and-see and I know how frustrating this can be.


We do recommend that our members, if possible, consult a Scleroderma specialist, as this bizarre disease has many little idiosyncrasies which sadly some rheumatologists do not have the knowledge and expertise to deal with.


Now that you've found our forums, please do keep posting and let us know how you're faring.


Kind regards,

Jo Frowde
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