Sticky Blood-Hughes Syndrome Support

What a waste of time my appointment at Kings was

The consultant was not sure why I had been referred and I had to tell him. He says the diagnosis I had been given was wrong because other than my bloods I have not actually had any clots or strokes. Referred back to my local hospital. Instead of getting any answers I have actually now feel as though I have gone backwards!

I thought medicine was about prevention not waiting for something to happen and then acting.

Sorry for moaning just really getting fed up with being told you have lupus no you don't, you have hughes no you don't.

14 Replies

Really sorry you have had such a bad day, its so disappointing when you have had to wait for an appointment and then it comes to nothing.

I have to say I was a little surprised to hear that you had been referred to Kings when the centre of excellence is at St Thomas. Was there a reason why he referred you there specifically?

Perhaps there is a silver can now ask to be referred to St Thomas and at least you know you will get it from the horses mouth there!

Try and cheer up. it will be worth the wait. Ask for Prof Khamashta. X


If you are left in this situation, perhaps you have to think of a one off private appointment with Professor Hughes at London Bridge - know how you feel and have bought the T shirt etc etc. Sorry about this, it is so very stressful. M x

Of if you can a referral to St Thomas' Prof Khamashata


I can't wait for ObamaCare to kick in here in the States so we can also have more incompetence and fewer doctors and less services in our medical care too. LOL! Socialized medicine won't cut it. Only the chance of profit will drive people to outperform.


On the other hand, socialized medicine has a much greater stake in preventative medicine which in my mind cannot be underestimated. It often seems the goal in the states is to find the diagnosis to tage the presciption to, so we can keep the pharmaceutical companies rich at the detriment of the nation's health.


Thannks for your comments. Feeling really low today.



Approximately 2 years ago I was referred to the haematosis? and thrombosis clinic at St T's on my second appointment with them I was told I had Sticky blood/ APS didnt think too much about but have been going for appointments every three months since then. A couple of months ago had an email inviting me to join this site which obviously I did and because of reading peoples questions and answers here, it urged me to question the dr at my last appointment (1st May 2012) about my dianosis and condition (any letters sent to my GP say that I am under investigation for APS) and I now know that on all blood tests I have tested apL positive which in laymans terms means that I have APS without the clots and without ever having a clot they will not give a clear APS diagnosis from that clinic. Although they have ordered some more blood tests and a special scan on my legs as I had a kind of clot scare when I came back from Turkey recently and was put on fragmin for a week as a precaution and I felt amazing sorry this is sooo long winded but I hope it makes you feel better. And a great big thank you to all the people on this site who gave me the sense to start asking questions


Thank you and yes it does make me feel better as i chose Kings rather than St Thomas' because it was easier to get to but after yesterday I thought i had made the wrong choice but obviously I would have got the same answer as you.

Did they put you on any medication for it?



Yes I am also type 2 insulin dependant diabetic so was already on 75mg aspirin daily anyway as they throw drugs at you like sweets (as a precaution). Because I felt so well on the fragmin I have asked about going on that instead of the aspirin and I was also prescribed plaquenil for the joint pain which has helped with that and may be increased if my retinopathy result is ok. We are waiting on the decision about fragmin until after I have my op which is imminent


Ask to be transferred to St, Thomas's. You will get the correct diagnosis. Do not give up. It'S YOUR BODY and you know just how you feel. Good luck and hope all goes well for you.


Hi hon

Sorry to hear you had such a bad appointment.

As others have said would be worth going to st Thomas's or London bridge and hopefully getting some answers.

It is awful to be treated this way and sadly happens way to often with autoimmune conditions.

Keep fighting hon, you know your body and how you feel.

Take care gentle hugs love Sheena xxxxxxxx :-) :-) :-)


boy do i know just how you feel..mine was MS vs APS..

i went to at least 10 different doctors..1/2 said i had MS and not APS..the other half said i had APS not MS..

i took needles for MS and blood thinners for APS..i was a basket case wondering just what did i have..

i stopped taking the MS needles but am continuing with my coumadin.. i have now been told i have both MS & APS... go figure..


Hi jonsey,

i am really sorry to hear wehat you are going through maybe it m,ight be worth printing off some oif the information and showing it to your local doc or as maryu said try getting a referal to Prof Hughes but either way do not give up hope we all still here for you



Hi Jonsey,

Definately get a second opinion.

I too was told 10 years ago, yes you have the blood indicators but no other symptoms so 'go away and try to forget about it, lots of people have the positive blood indicators and never have a problem'. Several years later, two unprovoked thrombosis and lots of other problems I wish I hadnt listened to that doctor. I thought prevention was better than a cure??

Good luck xxx


I too have thankfully not had a clot or stroke (I have had MC's) I suffer terrible with symptoms though..migraines, exhaustion, skin rash, hearing, aches and pains etc etc etc as I'm sure you do ! Your symptoms are real, only you know your body ! In my opinion we are the uncontrolled meds until we have a clot ! Thank God for my GP and Dr K taking me seriously at St Thomas !


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