Newly diagnosed!

I was diagnosed with Hughes syndrome in February this year. I've had multiple PEs just over a year ago and a suspected mini stroke on Xmas day. I'm a nurse so had a very basic knowledge of Hughes syndrome but have only just plucked up the courage to look a bit deeper into it! It all looks very scary! It's so relieving to have a reason for feeling tired, frequent headaches and not remembering where I put my car keys two minutes before!

Thankfully, I was lucky to have a little girl five years ago :) was anyone else a bit daunted by all the 'could happens'?

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  • hi bobbyanne. i got last week so still getting my head around it. i only joined yesterday but have allready had positive feedback. i had blood clots on the lungs so have being on warthrin since september last yr. good luck and welcome . stacey

  • and welcome to you too! Mary F x

  • I also found out in Feb this year I have this too. Really hard to get my head around. But yes it explains so much! And finally after such a long time of testing, see doctors etc I finally have some answers. I also had a PE back in 2009 during my first pregnacy. Have you looked at the new Hughes website ... I have been doing a lot of reading on this and found it so helpful, also for my family and friends to look at too, to help them understand. I'm from New Zealand, and from what I can find, there isn't much help over here for this. Wendy

  • I am also on warfarin, it was given to initially after my PEs which the docs said were probably because I was overweight! It was stopped after 8 months and having had no follow up my GP referred me to a haematologist and after months of various tests and scans got my diagnosis and been back on warfarin a few weeks although finding it hard to keep my INR in range for some reason, it's up and down! I was perfectly in range previously! I am in Yorkshire also Stacey :-)

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