APS info please

[pinkyandperky]

Hi there,

I have had 3 miscarriages a premature baby a dvt and suffer with Phlebitis. I am always tired and my muscles are stiff and full of knots. I was tested for APS 5 years ago and told i did not have it. is this definitive? I was taking aspirin at the time as anxious about dvts. Should i ask to be retested?

[pinkyandperky]

hello,

I am not sure exactly which tests they did but it was with a specialist department at the local hospital and it was 3 tests spread out over about 6 weeks. I had a new baby that was premature and very ill at the time so i am afraid i did not take too much notice of what what was going on as i was in and out of hospital with the baby.

[MaryF Administrator]

HI, it sounds like you may have had the 3 main tests, they are listed our our charity website, under Hughes Syndrome/APS - main tests. It is possible to be sero negative and not pass the tests for a while, this is what happened to myself and children, however we all pass two out of three now.

Bearing in mind your symptoms and history I would get re tested and make sure that your consultant is off our list of recommended specialists, we have some listed under pinned posts on this forum, (right hand side), and also on the charity website: ghic.world/

MaryF

[pinkyandperky in reply to MaryF]

Thank you so much for having the time to respond and advise me, I don't want to be worrying and not knowing like i have been over these last years. I was not aware the test could give a sero negative. I have a doctors appoint booked so i feel more confident now to approach the subject. How do i ensure I get one of your recommended consultants please? is it possible to contact them directly or should i ask my GP?

[MaryF Administrator in reply to pinkyandperky]

I suggest you look at the list over on the right hand side of the forum and screen shot, photograph the ones in your area for your GP and also send or email them the charity website. MaryF

[pinkyandperky in reply to MaryF]

Thank you for your help, I have the list of consultants and i recognised the consultant from my previous tests. when i have my appointment with the doctor i will be able to give them the details. It just would be good to know instead of second guessing myself. although i have no other explanation for my symptoms. thank you again.

[MaryF Administrator in reply to pinkyandperky]

That is a good start, sorry about your losses, by the way. We all learn a lot of each other on this forum and you will find many women on here have had a similar experience on their own path to diagnosis. MaryF

[pinkyandperky in reply to MaryF]

thank you xx

[veganworld]

Hi there

I was diagnosed to have APS by professor Hughes himself. I was lucky enough to be taken under his wing in London. He placed me on Warfarin even though I don't test positive for it. He told me they are trying to work out why 5% of people have it but don't test positive. He made my diagnosis from my family history and my medical history and quite possibly turned my life around. I am ever grateful to this wonderful Man. Some clues were miscarriage, clot on lung for no reason, auto immune and epilepsy in family, memory tests and a brain scan showing I had mini clots in the past which I thought were migraines and Chronic fatigue following clot.

Best wishes, try to get to a centre which specialises in this.

Kaz

[pinkyandperky]

thank you, this forum is really helping me gain the confidence and courage to try and find out if i may have this.