I am pretty new to this site, and got a diagnosis of APS a couple of months ago after years of wondering what was wrong with me.
My symptoms started with blotchy skin (corned beef skin) as a young girl, and then major migraines as a teenager, i saw a haematology specialist and he said there was nothing wrong with me.
As an adult i have experienced 3 miscarriages and saw the specialists in Shrewsbury hospital who discharged me and said my miscarriages where down to bad luck.
My dad heard a radio station talking about hughes syndrome and the symptoms and thought it sounded a lot like me, i asked my gp to refer me to a specialist and he wouldn't as he said Shrewsbury were following European guidelines!
We paid privately to see Mr Raj Rai at st marys hospital London and after tests he diagnosed APS and factor V Leiden.
Since then i have been back to see my GP to express that me and my husband are planning to try for a baby and to ask if he could refer me to someone who could look after me in pregnancy with knowledge of hughes. (closer than london) My GP was very patronising and basically said that APS is controversial and the referral was unnessacary.
So i did a bit of searching on the Internet and came across Liverpool Womens Hospital (which is about an hour from me) I e-mailed them through a link on the site, explaining my situation and concerns, i was surprised when the next day the Matron e-mailed me back with a reassuring e-mail explaining that they could help me.
After persuading my GP to refer me, I had my appointment yesterday, my GP had told them that i was looking for a second opinion?? I think he was the one looking for a second opinion!
Anyway I saw Ms Dawood, and what a lovely lovely lady! I feel like a weight has been lifted after speaking to her! She explained everything to me so clearly- the risks with pregnancy, my situation, the precautions they take, how often they do scans, the birth EVERYTHING! And she has agreed to look after me from conception to Birth, I feel relieved!
I basically wanted to share this on here to help anyone in a similar situation.
So now all i need to do is get pregnant! hopefully things are looking up!
sorry to waffle, but i wanted to share.
Good luck, and take care everyone