How many of you are seronegative APS or also have sneddons syndrome?

[Jen_1984]

Just curious about how those of you who are considered seronegative APS got a diagnosis or even got a doctor to listen to you. I just got my labs back and they say they are within normal range, I question whether or not I am seronegative APS or even something else. I am also curious about your personal stories of diagnosis if thats okay. Thanks!

[MaryF Administrator]

Hi there, if you go to my profile you will see details about my path to diagnosis, many of us have told our histories on here, and yes i am seronegative and at age 47 have only just passed a test for lupus even though it is quite clear from incidents that this stretches right back to teenage years, Mary F x

[Jane-Martin]

Can you tell us what tests they did? sadly most of the labs do not use all the tests available, due to cost and equipment available. It is the tests that let the patient down....badly. It will help if you show what tests they are saying are within normal range. If you don't know, please ask. It is your right to have your results. If you can let us know I am sure we might be able to help you better. Many here have their complete (semi complete) story in their profile. Take a look. Goodnight all, I hope to get a few hours tonight. Had no sleep last night - and I take sleeping pills!

[Hidden]

I am now Seronegative despite 2 previous positive results and 2 clots. The only person to really listen to me is Professor Hughes, my GP is doing her best to support me but is in a difficult position due to the stance of St T who disagree with the Professor.

I dont have Sneddons but am mild Sjogrens.

[Jane-Martin in reply to Hidden]

How can St T consider you Seronegative, when you have had two positive results in the past and two clotting events! Defies logic and when did this trend to disagree with the Professor become so common? I hope this is going to be bought up at the next patients meeting. It is something that annoys me so much, I want to fly over and have it out with them! Infuriating.

[MaryF Administrator in reply to Jane-Martin]

It was brought up last time! and I think we as patients will have to be tougher about it. The case of the identical twins with Professor Hughes was brought up one always testing negative and the other positive, despite them both having Hughes Syndrome. Mx