Going to see the Prof on Tuesday strangely nervous

I am going back to London on Tuesday. I know how lucky I am, but I have kept my head down for 5 years not seeing anybody. I have not been retested for APS since 2004, I really would love a positive test but am afraid I will be negative again . I suffer so much but always seem to be mrs negative. I don't really know what he can do for me. I have warfarin and tried plaquenil in the past so he most likely has nothing else to offer. Despite all my new issues I don't think there I any other treatments. I guess I should just stop moaning and be grateful. My son seeing the prof and getting a positive tested has shocked me into action.

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  • Well of all people to see you know that the Prof is not going to mock a seronegative result. He will also give you useful information about how you can manage your condition and even if he tells you nothing new at least you come away with peace of mind. For me that would be money very well spent. I hope it all goes well.

    Let us know how you get on. x

  • I replied to this last night but for some reason it vanished.

    I realise the Prof will not mock, he was the one who allowed me the diagnosis back in 2004. I have just always felt like a fraud and nobody knows except my hubby I am seronegative. I would like another test but I am still afraid it will still be negative. Thats why I am nervous.

  • Hi jade

    You will find Prof Hughes a lovely, helpful and understanding man. He certainly will not mock you or a negative test.

    Make sure that you have a detailed list of questions and get him to answerr each and every one of them. I oftne email the questions to him before my appointment date to: Kim.Hough@HCAHealthcare.co.uk Kim is lovely and will make sure that Prof has your email.

    Best wishes.

    Dave

  • Thanks Dave, that is a really good idea to write it all down. I think I know it so well but I am pretty sure I will forget something that has bothered me.

  • Hi Jade

    I know I forget if I don't. Make sure that you get him to focus on your issues and not to be too general.

    Best wishes.

    Dave

  • Good luck for Tuesday because you are feeling nervous i bet it will go well hun xx

  • thank you, yes I get that logic, if you expect the worst then it can only get better.

  • Good luck, i am seeing Prof Hughes on Weds and have just tested negative so know and understand just how you feel. I am not even sure that my family understand what it is like to have these symptoms and a negative test. PLEASE, let us know how you get on rooting for you big time! X

  • To be honest, my biggest fear is that i will break down and cry out of sheer frustration of the situation :(

  • Crying is a natural emotion. Let the tears flow if it happens. You are not a fraud. I was diagnosed with sero neg in 2005 by Prof Hughes. He told me to never let any doctor say you do not have APS. Because i have may clinical symptoms. So head up high and good luck. You will be fine. Bernadette.

  • Lissylou, I know exactly what you mean. I was diagnosed by Prof Hughes in St Thomas in 2004. I never told a soul it was negative until last month when I finally told my hubby after my son got a positive test with the prof. I have hidden it as I think friends and family would not understand. They find it hard enough because I mostly look totally alright.

    I hope your visit goes well on Wednesday, I will be thinking of you.

  • Thanks Jade, you too. Ive had two clots and two previous positive tests so feel frustrated to now test negative. Good luck! X

  • Hi there, please do not worry, many of us are aware that this seems to happen from time time, in direct contrast to written advice and information flowing from our Patient's Day. I hope we will be able to collectively bring this up and find some way to resolve this. I am deeply affected by this issue, and only the addition of Professor Hughes in my own case has helped. The hospital is however helpful with both myself and my daughter... but I feel it is an unnecessary stress to be worried about this, and the fact that you have had two previous positive tests says it all. Mary F x

  • Mary, I too was 'saved ' by Prof Hughes, his juniors at Tommys told me your tests are fine you dont need anything. I was so lucky to literaly catch him in a corridor and ask him to speak with me. I also had a friend pass a letter to him from me during a private consultation as I could not get another appt for a year at that time.

    My issue is my good GP (now retired) has had to write to consultants that I have never had a positive test. One wanted to stop warfarin, one said I did not need to be above INR of 2 as not had a clot or positive test.

    I live in fear of warfarin being taken from me for this reason, especially in later years when the prof retires.

  • Well I should just be very clear and concise at the appointment, nothing more you can do. A lot of us are in the same boat. Good luck. Mary F x

  • I've been tested at least 6 times and only had positive results once!

  • Hope you have a great night's sleep. Good luck! Thinking of you. xxx

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