Hugh's syndrome/APS thread

[Noddyrocks]

Decided to stop the hijacking of another thread (confuddled's idea :)) and start a new one. I would be interested to hear your stories and how you were diagnosed.
Breifly, I was referred from throbophilia screening after developping a DVT about 12 weeks after my daughter was born.
My first test for LA came back positive, the second borderline and the third negative. I have pretty much been dismissed and am now pregnant again. Having also had superficial clots along the way (without any varicous veins) I am wondering where this leaves me, especially as I have been in pain in the same calf for the past 2.5 weeks. (but thats another story!)
Obviously I am not on any anticoagulants,My Dr was supposed to have reffered me but I haent yet heard aything from the hospital.
I was wondering what you thoughts were on women who have previous clots and becoming pregnant?

I am interested to know how you have been managed and if you trust your Dr's with your illness.

Thankyou In advance!! :)

Sorry I think it is 'Hughes' syndrome.

HI
I think you should go back to your GP straight away and get refered to the Haematology team at your local hospital.The pain in calf sounds worrying, have you developed anoyther DVT? I think you should be on blood thinning injections throughout your pregnancy as you are high risk already having had a previous DVT.
If your calf is swollen, painful, hot to touch I would go to A&E in the morning.

Ilovemybabies - I have had this pain for 2.5 weeks now.
1 st went to my GP for my booking appt and told her about it, she sent me home telling me it was muscle cramp.
Went into the hospital 2 days later as wasnt happy with diagnosis without tests.

Had D dimer which was high, then 2 point scan. Wasnt happy with 2 point scan as it does not scan calf (which is where my pain is)I have always had whole leg U/S before which show all the calf veins.

Went back yesterday and they did another d dimer which had dropped (this I find a bit strange to have dropped in couple of days?!) because it had dropped they sent me home with paracetemol!

So am still not on any treatment and in pain.
I know this isnt muscle pain and I know what I am feeling. I'm pretty fed up right now. :(

One of my family memebers suggested a ruptured Bakers cyst but surely the Dr should have ruled that out too?

Sorry for going on!

Hi,sounds odd that your d dimer should have dropped.Does your leg get more painful when you have been walking as this could indicate a clot or swell up more in the evening. I would go back to your GP and ask him to refer you to the Haematology team at your local hospital. Where abouts are you.I would push to get it sorted especially as you have hadclot and a +ve Lupus. Good luck

I think its odd espcially as I am pregnant and it would tend to rise in pregnancy rather than fall.(even though I am still in early pregnancy and I dont think it affects d dimer that much still seems odd to me)

I think the pain gets wors throughout the day especially when I get up after sitting or lying down it just goes into a cramp until I get it going again. But its like a constant ache there too whn I am moving around. I noticed it worst in the evenings.