A short article - by Patient Info - Hughes Syndrome/APS

[MaryF]

patient.info/health/blood-c...

Mary F

[MaryF Administrator]

What a shame..MaryF

[MaryF Administrator]

That Irish one I found which you then put on here is better, there is going to be some movement in Ireland re up today knowledge, somebody helping with that, great to have good news, and see things getting out there. MaryF

[lupus-support1 Administrator]

Thanks Mary. Have reposted in LUpus Patients Understanding & Support (LUPUS)!

Hidden - if you would like to leave a comment, please do!

[MaryF Administrator in reply to lupus-support1]

Thank you, some articles are better than others that is for sure. So pleased that the information is getting out there, and of course if people want up to minute information they can keep an eye on our associated charity: ghic.world/

MaryF

[Wittycjt in reply to MaryF]

👍

[Frodo]

I thought the first part of this was helpful, the rest not so much. It seems to say that only if you have a blood clot or pregnancy problems should you be tested, and then only if authorised by a hematologist, and even then don't test everyone who has a blood clot, AND if you have the antibodies it doesn't mean you have APS.

What about all the other symptoms that might mean someone has APS? I thought this was a relatively inexpensive test that a GP could do? Surely that makes more sense, they can then refer on if necessary.

Personally I'm still having the issue about whether or not I do have APS despite having 3 positive tests for Anti-beta glycoprotein I antibodies so I'm finding it all very confusing. My primary symptoms being cerebral, migraine/neuro/exhaustion, and more - severe enough to ask for the test - but so far not blood clots or history of pregnancy issues.

[MaryF Administrator in reply to Frodo]

I think it is good to have a wide range of articles on here, and yes others are better, but I am still glad that information is out there. I have a few jobs to do updating various links I have been contacted about, plus new avenues. MaryF

[Frodo in reply to MaryF]

Oh yes, I agree, and parts are useful. It's also good to know what the current medical position is.

[Lure2 in reply to Frodo]

Hi Frodo,

Yes it is very confusing - this illness is so rare and so few Specialists know about it.

In a way you can be happy that you have not had severe bloodclots or pregnancy issues.

I can tell you however that I also have the antibodies positive, and like you, I have had cerebral symptoms. They have never SEEN anything (a clot or something) on me. I have had TIAs and probably PEs but they were MICROCLOTS that are not seen on a Scan. Now I have pulmonary hypertension and leaking heartvalves as a symptom from it all. The last years I have been properly anticoagulated.

So what I mean is, that if you have symptoms, you should ask a Specialist for anticoagulation and obviosly also a diagnose.

Kerstin

[Frodo in reply to Lure2]

That's helpful, thank you Kerstin.

Yes, I'm happy not to have had those severe manifestations.

I wonder how they know about the micro clots if they can't be seen? They must have some way of assessing the symptoms.

I've just found out I have atrial fibrillation (heart rhythm disorder) so have just started an oral anticoagulant. I've had some much worse aura symptoms already, though in other ways I feel a bit better.