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

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!

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  • 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

  • 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!

  • 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.

  • 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.

  • 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

  • Hello Jen. The problem with seronegative APS is that the diagnostic criteria for APS set by a panel of Doctors says that we have to have positive blood tests and does not seem to take into consideration those of us that have all the clinical symptoms but dont test positive. They have a sort of proviso that states that clinical history must be taken into account but the problems come when inexperienced Doctors who dont feel confident going outside the box stick rigidly to the diagnostic criteria.

    The other thing that has to be considered is that some Doctors may even feel that it may put them in a difficult position with insurance etc if they misdiagnose or treat somebody incorrectly, so by sticking to the diagnostic criteria rigidly they feel they cant go wrong.

    Doctors like Prof Hughes who see nothing but APS patients can feel confident in making a diagnosis without the blood results but as my Stroke consultant said to me, he just does not see enough patients who are seronegative to make that judgement and feel confident enough to diagnose and treat.

    As to why Doctors would be opposing Prof, Im not sure that they are, more that they are following the criteria and not feeling confident to make their own judgement. I agree though that there does need to be more clarity as to how people who once diagnosed seronegative are continued to be treated so that we get continuity of care without this continual fear of having treatment withdrawn.

    In answer to you direct question, Im seronegative, was diagnosed by Prof Hughes after a Stroke in 2011. I have also had a PE in 2006, had 3 miscarriages but two healthy children. been tested for MS and had all the usual issues we all had along the way and clearly had issues with Raynaulds at 11/12 years old with things going on from there. Apart from APS I also have Sjogrens, Hashimotos, Non Celiac Gluten Sensitivity, CFS and Hemicrania Continuia. I am currently being tested for some other things after a brain scan last month - the saga continues!!

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