Posted 15 February 2011 - 05:33 AM
Tomorrow I will be going to my appointment with the scleroderma specialist and carry on being scared of the unknown. I have read again lots of the comments of crest stories and antibodies. So my question is that I only had one blood test and I don't know what the doctor asked for, just to check on my antibodies I guess. It says, Ac antibodies, positive centromere, titer 1/5120 ENA positive cenp.
I believe it meant that is that the only thing they found wrong with my antibodies, but after reading your posts I have the idea that maybe I could also have SCLl-70 and others things too. Is that right? Or do you think the blood test can be different over here in Europe?
If they look for abnormality in your autoimmune system I guess they look for everything, don't they?
Hope to hear from you soon and thanks to all.
Posted 15 February 2011 - 08:59 AM
The first tests that are usually done are for anti-nuclear antibodies (ANA) or anti-centromere antibodies (ACA). Other tests might be done, especially if the results of the first test(s) are ambiguous. We have a very good section on antibodies and scleroderma here. It is worth reading. I think what you are asking is whether or not the one test you have had is enough for a diagnosis. The answer is no. The diagnosis of scleroderma is made primarily by clinical signs and symptom, although antibody testing can point the way to a group of illnesses to look more closely for. We have a very useful brochure with a checklist that you can print out that has a checklist of symptoms here.
When you see the specialist tomorrow, a good thing would be to take a list of your questions with you and also a list of your symptoms. I hope your appointment goes well.
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Posted 15 February 2011 - 09:29 AM
Good luck with your appointment with your Scleroderma specialist tomorrow.
I can't really add anything to Jeannie's helpful and informative advice, except to say that I was equally confused about antibody testing when I was first diagnosed and in fact spent many happy hours poring over the details of my blood tests. I think we all want to hear a conclusive diagnosis and feel frustrated when the specialists aren't always able to tie everything up neatly. I've since learnt on my Scleroderma journey that nothing with this bizarre disease is straight forward as it affects each sufferer differently.
Do let us know how you get on with your appointment tomorrow, won't you?
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Posted 15 February 2011 - 10:05 AM
My question was - if they found the anti centromere and no SCL-70, it goes more to the CREST syndrome than the diffuse. If I suffer scleroderma, but as I already have the heartburn and dysphagia, and sometimes Raynaud's syndrome, do they need another blood test to find the SCL-70?
Now here in Belgium it is end of the afternoon, I'm going to be busy and won't bother you again with questions today.
Wishing you both a great day .