Went to St Thomas on Friday and found out I have tested positive for Hughes. I finally feel that people will start to listen to me more now I have 'a label'.
As many of you, I feel scared for my future and what it will bring. Not sure if being positive is a good thing or if it has confirmed my fears.
MJ x
Well done, as Professor Hughes often state those with seronegativity with their history of obvious clinical events must be treated the same way, alas this is often not the case, I hope this changes. As the professor often says, it is the tests which are failing the patients, rather than the patents failing the tests. I hope your care becomes improved as a result. Mary F x
Well done, can only echo Mary as an on-off positive/negative tester i know how difficult it can be. Hope you now receive your much needed help and support.
Very pleased for you.I am sero negative so far and I know how difficult it is. I am so glad that we have doctors who understand the limits of the tests.All the best Ann
i have raised this with my MP saying how difficult it can be with positive blood results and a struggle so mentioned it must be awful for those with all the symptoms and history of clots to get heard and listened to! he is going to email health secretary i mentioned raising the profile in the house of commons as well
It was a follow on from raising awareness and the existing nice guidelines because i mentioned it is a great start but still not enough info and went on to say about the blanket guidelines of an inr 2-3 giving my history as an example and the need of an inr of above 3 to keep me well i went on to say many other sufferers need higher inrs and this gets challenge in hospitals etc because doctors mainly concern themselves with the risk of bleeding when our risk of clotting out weighs this sorry rushed email hope it makse sense kathy xx
Congrats on crossing over to the less-likey-to-be-dissed side.
Over here in The States I have a couple of friends who I think may have APLS. I don't nag, I have only brought up the issue once--with the girl who has had 3 miscarriages, and with the older guy who has had a series of strokes, heart attacks and other clotting events with bizarrely low blood counts.
What can you do? " I had the tests and they say I don't have that.". And I know! I know! I'm not a doctor--just the English major housewife.
But still.
Sigh.
( repeat prayer of St Francis to self.)
Gina
Gina, today I am firmly on the "most-definitely-likely-to-be-dissed" sero-negative list!!! (I'm not bitter...much) 
So sorry. I remind myself that as frustrating as my journey through medicine has been, at least I am not sero negative. Sympathies.
Of course, I had x7 cases of " mono" within 14 years in my youth. Most current docs now agree that these outbreaks of "mono,," especially when the last case of " mono" was " cured" with a round of steroids, were much more likely to be lupus. But my EX rheumy insists that without a positive ANA that I should never even theorize that I had/have lupus.
Sigh. But at least I count myself fortunate to have that strongly positive IgG cardiolipin antibody.
Proof!
Well I am positive for ANA antibody but not for the APS test.
Thanks for messages. It's great to talk to people who understand what you are going through.
MJ x
WoooHoooo... NO Cancer !!!!
Beta 2 glycoprotein now negative....should I pay for a private test?
negative APS blood tests
No treatment for APS
