Sticky Blood-Hughes Syndrome Support

Blood Tests Negative??? WHAT!

I have recently seen a heamatologist here in Perth Australia. He ran a heap of tests and i have been told all my tests were normal except for my homocysteine levels which are too high. I am totally confused now. One doctor says YES you have hughes as you tested positive once and negative once...he said my symptoms were all Hughes....DVT,PE,TIA,STROKE,HEADACHES,TIREDNESS,MUSCLE ACHES.etc etc.....So the question is??? Do I have hughes or do i not? Am i going crazy...or not? I have never felt so confused in all my life...I thought seeing a well regarded specialist would make life easier....boy was I wrong.

I have looked into homocysteine levels and can understand that has I have had the part of my intestine that absorbs B12 removed.....I have not felt this low in ages......I wish i had never gone to this new guy...

4 Replies

Hello, sorry you have had such a difficult time. Lots of us on this site are classed syndrome.. you will see from my life story, if you look at my profile that I have had a labelled clinical diagnosis for Hughes... and at the age of 47 have only now managed to pass a Lupus test... despite having had clinical incidents for that also. It is frustrating: However you can give the new guy this paper to read, which they may find useful.

Best wishes. Mary F


THANKS.....I felt so shocked as i had just come to terms with Hughes...I could hug you!


All my blood tests at my local general hosptial are negative, but i have been told i have antibodies negative hughes, as i have all the sympoms and at least five changes on my head scan. I have been refered to St.Thomas in london, as they can do more blood test and may pick up a different antibody that is postive. Is there a lupus unit that you could be referred to? Also if your b12 absrbition is low as anyone put you on vitamin b12 injections? My dad uses them although he has ms not hughes, only has to use 1 injection every 3 months. Hope this helps.


Hi, I too am seronegative and was dx by Prof Hughes on clinical history after my Stroke. All my blood tests are negative. I recently had an appointment with an immunologist who was adamant he was wrong and I did not have Hughes and even wrote a long rambling letter to my GP telling him this and that I should immediately come off my Heparin injections!!

Luckily my GP sent the letter to me with the comment, "you have good instincts about yourself"!

Even my Stroke Consultant takes the view that he bows to the expert that sees hundreds if not thousands of cases of "his" disease and if he decides thats what I have then he's happy with that.

If you have had a diagnosis which YOU feel comfortable with then its your body and you are entitled to say you want to stick with that. There will always be people that will have other opinions, its up to you if you want to listen to them. Personally I don't!!

I saw my immunologist again last week and he started again, I calmly asked him how my stroke fitted into his equation, he paused, thought for a moment so I suggested might it possibly be the APS antibodies (that I don't have)....., possibly he answered and went on with a rambling explanation.......

I think he had forgotten about the Stroke in his eagerness to scotch seronegative results! :-)


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