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TGK

Anti-Fibrillarin Antibodies anyone?

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Hey y'all!

Aside from several small studies and journals referencing those studies, I have found it difficult to find much regarding Anti-Fibrillarin Antibodies online- much less someone else with them.. Anybody else out there with these antibodies? I'd love to share experiences. 

 

T

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Hi TGK,

 

I've included a link to our medical page on Antibodies in Systemic Scleroderma, which does include Anti-Fibrillarin Antibodies  (AFA), which will give you some information about the various antibodies which can occur in systemic scleroderma patients.

 

However, whilst it's certainly interesting to research autoantibodies (particularly ones which affect you) antibodies, although useful for diagnosing, categorising and predicting the likelihood of certain complications, are only a small part of the diagnostic process. It is quite possible to have positive blood tests and yet never go on to develop the disease and vice versa and your blood test results can vary each time. Far more important are the clinical signs and symptoms of the disease and we do have numerous threads on this subject.

 

When I was first diagnosed, I spent many happy hours poring over all the results of my various blood and other tests ( I don't have the AFA antibody, but I do have a couple of other interesting ones). I found it absolutely fascinating (but then I'm probably a bit sad and should really get out more!! :wink:)

 

Kind regards,


Jo Frowde

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International Scleroderma Network (ISN)

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Hi Joelf!

 

Thank you for your kind and informative replies! And yes, haha, I find it fascinating as well. :lol:  I did follow the link;  however only saw the link for Anti- Fibroblast Antibodies. I may just be missing it! Thank you again.

 

T

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Hi TGK, 

I have gone through Gareth's blood work and don't find that specific test.  He did have blood work for Fibrinogen levels, when first diagnosis'd, and it was marked High.  I'm never sure of what each specific test indicates when High or positive - meaning does high fibrinogen levels always indicate high fibrinogen in all parts of the body?  When he had his neck repaired (plate put in for degenerative arthritis - Oct '15) the doctor had to add 3 hrs to the surgery just to chisel away the mess in his throat.  He said his carotid artery, esophagus, and airway had congealed into a solid mass that was like chiseling through wood.  I'm assuming that is from too much fibrinogen?  If you find the answers, please, share with all of us.

 

Take care, everyone,

Margaret

Mom to Gareth, 30 years old, DS/ASD

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