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Amrtia

Positive ANA and Anti-Scl-70, confused and scared

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I'm new here. I'm 28 years old and received my lab results a month and a half ago. Positive ANA and Anti-Scl-70 (4.4). I keep reading that Anti-Scl-70= systemic scleroderma=poor prognosis/organ involvement/rapid thickening of the skin. My rheumatologist can't give me any clear-cut answers to any of my questions. He says autoimmune diseases are tricky to diagnose and we have to "wait and see" how I respond to medication (Plaquenil) and also get more tests done. The waiting and seeing is the part I'm struggling with. Actually, I'm struggling with the whole thing- the actual symptoms, the anxiety of not knowing, the prospect of not being able to live the life I want to.  I also don't even have a diagnosis yet. Or maybe I do? I'm confused about what the positive Anti-Scl-70 means. Is it always indicative of systemic scleroderma? How likely are false positives?

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Hi Amrtia,

 

Welcome to these forums!

 

I'm sorry to hear that you've been experiencing some worrying symptoms and blood test results. As it happens, false positives are very common with anticentromere antibodies. Please note I have no medical knowledge (apart from a now out of date first aid certificate). However, I would reiterate the advice we always give regarding blood tests; whilst a useful tool to help to obtain the full picture, they are by no means conclusive or the be all and end all of a diagnosis and it is possible to have positive blood tests and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. Far more important are the clinical signs and symptoms of the disease. We do have numerous threads on this subject.

 

At this stage of a possible diagnosis it's difficult to know which way things will go. One of the main problems in obtaining a definite scleroderma diagnosis (or a diagnosis for any autoimmune disease, come to that), is that these diseases are incredibly complex and affect all sufferers differently. Actually the average time to obtain a diagnosis is, I believe, six years and also the diagnosis can be changed, so because of the bizarre nature of scleroderma, it is possible to be un-diagnosed and then re-diagnosed, as the symptoms can also wax and wane. I'm afraid this can be a pattern with many autoimmune diseases. I realise how worrying and frustrating this can be and I'm afraid that very often the rheumatologist does recommend a policy of "wait and see", until further symptoms manifest themselves or not, as the case may be. We do recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise. 

 

However, the anxiety with which you're suffering is most certainly not helping the situation one little bit; I understand how anxious and worried you're feeling, but unfortunately one thing that is certain to exacerbate any illness is the stress involved in trying to find a diagnosis, as stress and anxiety can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and is particularly damaging for autoimmune or any other diseases.  I would suggest that one of the things that might help you would be to seek professional counselling or similar to deal with your anxiety. You would then, perhaps, be in a better place to deal with any possible diagnosis of scleroderma, or any other disease.

 

Kind regards,


Jo Frowde

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ISN Secretary of the Board

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International Scleroderma Network (ISN)

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