A light in the tunnel

Hello everyone,

I have had my local doctors visit today, that went for an hour...great doctor and ready to listen. I don't think he fully understands Hughes syndrome but knew it as the old lupas anticoagulant.

He has referred me to a heamotogist speacilist in our capital city Perth, western Australia

Apparently Dr Steven Ward is very good and will be able to much sure i am on the right track for assessment and review asprin or go on to Warfrin.

I am very pleased he sees the need for me to see someone asap.

I asked him about my recent three days of dizziness and foggie brain, uncordinated and just off, he admitted he didn't know why i would be feeling like this but I am really sure after reading all the transcripts here and information that I'm having a rough few days and until I get the right measure for my blood it will be like this to sort it out properly.

I read some where about flairs that we sometimes have.

Thank you for this opportunity to express my fears and my needs and here.

Karen ☺

8 Replies

  • Result! I think it is important for those GPs who don't understand Hughes, or any other of the countless rare conditions (is that a contradiction?), to recognise that the best thing for a patient is a referal.

  • Hi tim

    I agree very much with what you have said. My next hope is this speaclist understands Hughes.

    I feel a little bit of relief that im starting to move in the right direction.

    One other question.....yes another 😒

    I have been experiencing quite a lot of pain, like tightness behind my right knee for a while now. I actually forgot (surprise !!! ) to mention it again to my doc today.

    I know joint pain can be associated with Huges but this feels more muscel not bone. Any clues ?



  • Karen. I am not qualified to answer beyond saying yes, some of us have pain (all over) but that you should check with your doctor as it might be anything.

    Best of Luck

  • Well done with your progress so far, let us know how the next stage goes. MaryF

  • Thank you mary, will do

  • Hi Karen.

    Good luck and keep us informed.

    Best wishes.


  • Thank you Dave, speaclist booked fr 29th September.

    Will keep you guys informed.

  • That's good then, a quick appointment. :)

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