A light in the tunnel: Hello everyone... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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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.

in reply to tim47

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 ?

Cheers

Karen

tim47 profile image
tim47 in reply to

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

MaryF profile image
MaryFAdministrator

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.

Dave

Thank you Dave, speaclist booked fr 29th September.

Will keep you guys informed.

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

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