Hi all

[Lolly83]

I haven't been diagnosed with APS, but I'm convinced this is what I have. I've had 3 miscarriages a placental abruption where I clotted behind my placenta, I'm clumsy my hands I joke never do what my brains telling them to do. Terrible migraines dizziness joint pains the list goes on. I'm going to drs today to ask for the test I'm in all honesty scared.

[Manofmendip]

Dear Lolly

Welcome to our group.

You certainly do seem to tick a lot of the APS boxes and you should try to get a referral to an APS experienced consultant, as soon as possible. Where are you from?

Visit the HSF website and print out iniformation from there and take it to show your GP and ask to be referred; suitable consultants can be found by contactinig the HSF.

Keep in touch and let us know how you get on.

Best wishes.

Dave

[MaryF Administrator]

Hello, and a big welcome to you, and I am glad with your symptoms that you have found your way to this forum. I will firstly of course say, without jumping to any conclusions, that you are right to investigate this disease as a possibility, and secondly I will say, it is far better to have a diagnosis than not to have it. Please before you go along to your GP, with the idea of a referral, take a look at our charity website, which contains the information your GP will need to look at, also the tests to do, and also a list of APS specialists throughout the UK. If not in the UK, we can at times direct you to the right care, as can other members from all over the world. Wishing you all the best with your path to diagnosis, and here is that charity web site link: hughes-syndrome.org/

Many of us on here share your symptoms, and as well as being armed with the website for your GP, also take five minutes to write down your history to date in bullet points, this will help the GP and any referral that is made for you. Mary F x

[Lolly83]

Just came back, he's sending me for the aCl and lupus but not the third our area doesn't do it. I took a list and he looked at the Hughes website. I didn't feel he was convinced but having bloods done next week so we will see in a few weeks. I did ask if I had ever been screened after my miscarriages and I was surprised to hear I had not. I didn't think of asking for a referral he only mentioned it if these other tests come back positive

[Manofmendip in reply to Lolly83]

Well done Lolly.

If the bloods do come back positive then please do ask him for a referal to a suitable specialist.

Mary will also tell you of her experiences with what is called seronegative APS, which is where the blood tests are negative but the diagnosis is made by referrence to the symptoms alone and by excluding other possibilities.

Best wishes.

Dave x