Tired of this Merry Go Round....DOES IT END????

Was advised by another APS patient to see this "fantastic" heamotoligist here in Perth Australia....so off I went with my referral. Outcome total and utter disbelief of mine and my GP's part.

My referral letter stated that I have had numerous DVTS and four miscarriages. Some prior to 2007. It also stated that I have had a subclavian blood clot in 2009 that went undetected and had created collaterals as it had almost blocked the vein. It also stated that I have had one PE,one TIA, and MRI that showed signs of numerous mini strokes, a clot in my leg, a bleed from my kidney that required transfusions, a probable TIA in April (probable as they couldn't find it as I took an allergic reaction the the contrast dye and had to have the procedure stopped so they could get me breathing again). I suffer massive headaches, have days when my legs seize and I walk like a nana..(no offence to any Nana's out there). I also create blood clots regardless of anticoagulation therapy. I have issues with my vision and my GP had been treating me for catastrophic Hughes.

I arrived at the new specialist who asked a few questions...ordered a $500 blood test and said he would get back to me with the results.

The specialist wrote a letter to my GP stating that I tested negative for APS and that due to me having no venous issues since 2007...that he felt I didn't have Hughes...he did state that all my symptoms are the same as Hughes but because the tests were negative he thought it wasn't. He did suggest I stop Warfarin and clexane and just take asprin every now and then..WHAT!!!!!!!!!.. For me the outcome was...a long wait, a loss of $735 and a huge amount of anger.

My GP has said that the guy obviously knows nothing about Hughes and seems to be unable to read either.so..........My GP said that if I stop the warfarin etc I may as well put a gun to my head as I produce blood clots at the drop of a hat and that the specialists advice could kill me. My GP was surprised that he didn't know anything about sero negative Hughes.

My GP is gathering all my info and history and test results and is going to send them all to Professor Hughes and is going to ask for help. I hope that we can get some advice from the UK. I feel totally blessed to have a GP who has attended one of the Hughes Syndrome lectures in the UK. I have more faith in my GP than ever and now fully understand the frustration of having this fickle condition.

I am going to keep my head up and keep looking forward and hope that maybe the Prof may have some new things we can try.

So....can I get off this Merry Go Round??? I don't like it

13 Replies

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  • Hi there, this is beyond belief, but unfortunately some medical staff can't move outside a blood test result, this is also happens in other areas of medicine, you must have felt awful, and all that money spent, I am so sorry, and I am glad that your GP is so cross, what a shame, do keep us posted as to what happens next, I hope your GP tells him off! Mary F x

  • This should be totally beyond belief but sadly this response from so-called experts seems all too common and I despair for us all.

    Sending you hugs ...thank goodness you have a sensible GP and he is on your side and willing to learn! Worth his weight in gold or whatever is the most precious at the moment.

  • So sorry to hear you have had to deal with this It is so hard to understand this kind of ignorance. And also the lack of caution given your history. I have sero negative Hughes too and got a diagnosis after my own rersearch led me to Dr Khamashta. Ib London In terms of alternatives. I switched to heparin injections after a long period of deterioration. I still have bad speLls with fatigue and chest pain. But overall it has been better than before. DR K has written a paper on its safety. I hope to move to the new medications when they are better researched. So great to have such a good GP. I would suggest that you or your GP writes to this doctor and gives him information about sero negative Hughes and also about how sudden withdrawal of anti coagulation cab trigger life threatening events. This guy could cause a a death if someone followed his advice. Hope you get helpful news from London soon Best wishes Ann

  • I hope that you sort out with Prof Hughes - he is brilliant, He diagnosed me with APS back in the 80's and then I moved away from London and was seeing Haematologists in another area who did not know how to treat etc. Unfortunately my late mother had this and I kept on telling them that my mother had had a stroke and that she had been on Warfarin, but it was like hitting my head against a brick wall and then \I had a TIA a year ago and that is when they decided to give me antioc oagulants etc but there was too much erring from them and I asked if I could go back to Prof Hunt at St Thoms and I feel so much in control now despite travelling for hours. Mind you I was in hospital last week due to haemorraghing from biopsy due to Warfarin despite my INR down to 1.8 They gave me Clexane but omitted the warfarin which I was worried about and the junior doc tor kept on saying how complicated I am. The haematologist did not even come to me and yet the nurses said that he was going to discuss, but no visit. I feel that I am too complicated and i do feel that they are not listening, thank goodness for Prof Hunt.

    Good Luck and hope you get the nec essary advice. My GP is very good too, she takes on board and is there when advice is needed.

  • Hi Mystynzl

    Oh my goodness, just typical of the dinosaur attitudes some doctors have!!

    I hope your gp informs this fool that he could kill someone by not updating his knowledge!! Blimey you would think they would move with the times instead of being so bl###y egotistical!!

    It is obvious from your symptoms that you have sero negative Aps! I hope your gp's contact with Prof Hughes gets this sorted and thank goodness your gp is so fantastic!!

    I wish there was some way you could get recompense for the money you've paid to this !!! (I can't think of anything polite to say!!!), but I know that's unlikely!

    I hope you feeling well today and try not to let this get you down, not good for any of us all this stress!!!

    Some docs need to remember the Hippocratic Oath!!

    Excerpts from said oath!

    I will respect the hard-won scientific gains of those physicians In whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

    I will remember that there is an art to medicine as well as science, and that warmth, sympathy and understanding may outweigh the surgeon's knife or the chemist's drug.

    I will not be ashamed to say "I know not", nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

    ......... May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help!!

    Sadly, I fear some members of the profession have forgotten this oath!!

    Right I will shut up now! Gone on long enough!!

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

  • Hi

    Thank goodness your GP is so switched on and is obviously looking after you. It must have been so worrying for you when this consulatant said come off warfarin. I got panicky when my hospital told me to miss 3 doses recently! Sometimes they just dont seem to realise the significance of what they are saying do they!!!

    My advice is just stick with your very knowledgable GP only for any advice and hope he has some good news from London soon!!!

    Take care and try not to worry too much

    Jane

  • I am soo confused Aps has to do with antibodies, so how can you not have the antibodies and test negative and still be considered to have aps?

  • Hi Renae

    There are quite a few patients, who after visiting

    Professor Hughes, Professor Kamashta and other doctors at St Thomas's hospital or London Bridge Hospital, have been diagnosed on clinical symptoms alone, without positive tests. These doctors and professors believe there are other antibodies at work in Hughes syndrome. They also believe that current testing is inexact and not sensitive enough!

    Patients without positive tests, have what's called sero negative Aps!!

    I hope this clears things up hon!!

    Also, in the UK treatments for Aps such as hydroxychloroquinine for example, have to be initially prescribed and monitored by a specialist or consultant. Gp's cannot or will not take responsibility for prescribing such drugs!!

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

  • If your gp has all this aps knowledge whu did he send you to another doctor?

  • Renae,

    I asked to be referred as another sufferer here in Australia raved about how good he was. I have catastrophic Hughes and was looking for someone who may have had more knowledge. He knows nothing about sero-negative Hughes.....we all try and are always looking for that doctor with the magic wand. I get frustrated as over here in Australia..specifically western australia there seems to be no one other than my GP who picked it up. As for my GP he is fantastic and i owe him my life but he too was looking for someone who could help him treat me. My GP and myself will now no longer share my care with anyone other than the Hughes foundation and the Professor himself.

    Mysty

  • Hi, Mystynzi.

    If I may, can I suggest that you have your GP contact Dr Tim Godfrey at cabrini Private Hospital in Malvern East, Victoria.

    I am 100% certain that he would be willing to help out.

    Hope this helps.

    Wayne L

  • Hi Mysty

    I echo everything that has been said above with bells on from a fellow seronegative Hughie whose life has probably been saved by Prof Hughes.

    I don't think the GP should tell this guy off I think Prof Hughes should and send him a copy of the oath that Sheena copied above! Unbelievable! I would actually ask for your money back after all what have you got to loose?

    Next time a conference is being scheduled for Hughes I think it needs to be in Western Australia or canada from some of the posts that I have read on here!

    Hang in there Mysty Im sure Prof will sort things out for you. :-)

  • Thanks for the support everyone I really appreciate it... HUGS all round

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