Not sure if i have APS.

[Alex94]

Hi to all!

I hope you are feeling good. Last year I had retinal vein occlusion. We did all the tests but they were negative. Then I checked my antibodies and only IgG anticardiolipid antibodies were slightly elevated (on the border with normal results). So I saw a rheumatologist who suggested that I should take a low dosage of aspirin, which I am currently taking.

Now, after 1 year I feel great and my IgG levels of anticardiolipid remain slightly lower than 1 year ago. I was reading the literature and I could not find an example with only IgG cardiolipid antibodies present and all of the other antibodies normal.

So my question is do I have APS and is aspirin low dosage enough if I have it?

P.S I am 24 year old male, never had any health problems except this one. Thanks in advance!

[Davideccroft]

Hi - I had something similar in 2005. I had a central retinal vein occlusion in my left eye. My doctors didn’t give any APS diagnosis for almost a year. That was only after my wife worked out what I had from symptoms and we insisted on getting the tests. She, not the doctors in Reading suggested I had daily aspirin until I was diagnosed. I then moved for work from Reading to Leicester in U.K. and have had a great haematologist since then in Leicester who understood APS and put me on warfarin. At the end of the day it’s your life so I suggest to read up on APS - there are a few books, plus all the info on this site. If you think it is APS then do what we did and make a brief summary to show the doctor with results you have so far and why you think it is APS. At one point I just asked my doctor in Reading how much he knew about APS and it was very little - but today this should be less common as there is a lot of literature available for the public and doctors.

[MaryF Administrator]

Hello, you will see that this paper, was written not too long ago, 'seronegative' Hughes Syndrome. Maybe give this to your GP and medical team. MaryF