Going to see the Prof on Tuesday strangely nervous

[Jade]

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.

[Manofmendip]

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: [e-mail] Kim is lovely and will make sure that Prof has your email.

Best wishes.

Dave

[Jade in reply to Manofmendip]

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.

[Manofmendip in reply to Jade]

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

[kathyD64]

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

[Jade in reply to kathyD64]

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

[Jade]

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.

[Hidden]

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

[Hidden]

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

[bernieembleton in reply to Hidden]

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.

[Jade]

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.

[Hidden]

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

[MaryF Administrator in reply to Hidden]

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

[Jade]

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.

[MaryF Administrator in reply to Jade]

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

[julieej]

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

[Hidden]

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