Sticky Blood-Hughes Syndrome Support

advice please!

Hi all, I'd like some advice if possible. At the end of my first pregnancy I developed pre-eclampsia and then had eclamptic seizures 12 hours after my daughter was born, so when I became pregnant again I was tested for APS and the results were positive. I took Fragmin during the rest of the pregnancy and again during my third pregnancy. What I'm unsure of is whether I should be taking any form of medication now or not? My youngest is now just 4. Should I have been retested after giving birth? Sorry to sound so ignorant but after my second child I wasn't really with it (I'd had an emergency c-section, my mum had died 7 weeks earlier and we'd just moved house.I've recently been feeling more and more tired no matter how much sleep I have, I have extreme difficulty concentrating and my short-term memory has become so bad I've wondered if I have some sort of early-onset dementia?! My brain feels like it just won't work properly, as if it's completely slowed down, like trying to run through treacle. Is it possible to test positive during pregnancy and negative after? Should I be asking my GP to test me? Thanks in advance for any advice you can give.

2 Replies

Hi there, you are asking the same questions that many ask, and the answer is yes you can test positive and then negative. However this does not mean that the disease has gone away. The best thing you could do is to see your GP if you find them helpful and ask to be referred to your nearest Hughes Syndrome/APS specialist off the Hughes Syndrome Foundation charity website list. As you wait for the appointment, (and do tell the GP if you are feeling unwell or worsening), write your medical history out in bullet points including pregnancy history, so you have it handy for the appointments, as it is so easy to forget half of it. Also if your GP is unwilling you could refer yourself privately, which is what some people do. Hopefully one way or another you can sort it and find out if perhaps you probably might need further medication. You are not alone, many on here have had a similar road to further diagnosis. Here is the list of specialists.

All the best MaryF x


I second what Mary has advised you.

Best wishes.

Dave xx


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