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Bek

Positive ANA possible CREST

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Hi Everyone

I am very worried about some blood tests that have come back with ANA titre 1:160 and centromere pattern. I approached my doctor due to my body feeling dry, mainly dry eye, dry nose and more recently dry vagina. I have hormone imbalances and was sure it was that, however, my doctor suggested Sjogrens due to a bit of fatigue that has been coming and going. I have 5 small children, so fatigue is apart of the deal. I have mild reflux occasionally, one sore wrist occasionally and odd numbness in my shoulder blade one side and face from TMJ.

To have a test result come back as suggestive of CREST I'm beyond concerned.

Am I a ticking time bomb? I have read that centromere pattern rarely gives false positives. My doctor told me she isn't concerned and to come back to see her after holiday. Many thanks

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Hi Bek,

 

Welcome to these forums!

 

I'm sorry that you've had worrying blood test results. However, I would emphasise that the blood tests are only a very small part of the diagnosis for scleroderma, which should really have the clinical signs included, and it is perfectly possible to have positive results and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. Bear in mind that your symptoms are far more important than your blood work.

 

If your rheumatologist isn't a listed scleroderma expert, you may want to discuss with them a possible referral to a scleroderma centre, which we do recommend that our members consult if possible.

 

We actually have numerous threads on this subject and if you go to our search engine at the top right hand corner of the page and type in "antibodies" and "blood tests" it will bring up a lot of threads and information.

 

I've included links to our medical page on Diagnosis of Scleroderma, to give you some more advice which I hope you'll find helpful.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Many thanks for your advice. My doctor as told me not to worry but searching DrGoogle has proven to be very scary. I don't see my general practitioner for another 12 weeks so in the meantime I just want to live life as per normal.

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Hey Bek, welcome and you're right, you are a ticking time bomb, we all are if you think about, one day we all go BOOM...GAME OVER!

 

CREST aka limited scleroderma is generally slower in onset, slower in progression with a better outcome than the ugly sister, diffuse scleroderma.

 

Nevertheless, you should be under the care of a scleroderma expert, however amiable your scleroderma may be now it has potential to be a wily critter which is why you should have tests (ECHO, lung function) to ensure nothing is going on and if it is, that treatment is swift.

 

You will always live life normally, there's nothing else you can do. Even if things got worse all you do is realign your normal and live it.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Bek,

 

Welcome to Sclero Forums.  Please keep in mind that I'm not a doctor, and have no medical training at all.

 

Since your symptoms of dryness sound prominent, it happens that they might be more in line with Sjogren's syndrome than scleroderma.  Are you aware that anti-centromere antibodies often occur in Primary Sjogren's?  See the PubMed article, Clinical significance and diagnostic usefulness of anti-centromere antibody in Sjogren's syndrome.

 

Sjogren's is treatable so it really doesn't need to be ignored or "not worried" about.

 

I'd recommend that you somehow get a referral to a rheumatologist, preferably one who has an interest in Sjogren's. If your insurance requires referrals from a primary care doctor, if I were you, I'd try to get a new primary care doctor.  It would seem to me that being referred to a rheumatologist for evaluation would be the proper way to reduce worry, particularly when symptoms and blood work align and point to a possible rheumatic disease.

 

:hug-group:

 


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.

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