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Its my big London appointment next week (with Dr Khamashta at the London Bridge Hospital) and now I'm absolutely bricking it. I got to see him without a GP referral, so he has nothing to go on to start with, and its all up to me. I have had so much going on in my body for the last three years (as well as lots of stuff intermittently for 10 or 15 years before that), that I really don't know where to start. I was almost hoping I'd be in a flare when I went down, but it seems like things are calming a bit at the moment anyway. I'm just so nervous that I am going to muck it all up by not being able to give a coherent history or explain symptoms well. I've tried writing key point lists of what is going on, but it all gets to be a mess when I have muscle and joint things, skin things, gastro things, bladder things and neuro things all happening at once. I do have someone going with me, but she's not the best at describing my stuff either. I'm just really hoping that I'll start talking, and he will be able to then take the lead and ask me questions, because otherwise I just don't know that I'll be able to get across anything sensible. What really scares me is that I will rant too much about things that aren't rheumatology, but then miss telling him significant stuff that would help him make a diagnosis. At this point, while I have some lupus features, I'm still not convinced that it is just lupus anyway.

Must try not to panic!
 

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Hey there :)

Try not to panic. He is a professional and you won't be the first muddled or desperate patient he has seen.

For my first appointment with the rheumy I simply typed up my symptoms dividing them into categories like - skin, muscles/joints, head, general, mouth,... if you see what I mean.

I wish you all the very best of luck,
Katharine
 

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Of course you are nervous. Before my first appt. with Dr. D'Cruz I had a huge row with my Husband and nearly left home because I was so stressed.
Although others tried to reassure me I felt I might well be the first person he ever showed the door to. Needless to say it didn't happen.

I had numerous pages of A4 with my history and symptoms. I kept a copy and gave him a copy. I numbered the pages so we would both know where we were. I also left a space at the end, where immediately before the appt. I wrote down the bits I remembered at the last minute.

It is a long journey for you. I assume you are staying in London. Try to be well rested before your appt. Do not worry about not being in a flare. On my first appt. I looked relatively okay when I went in, but it only took undressing and moving my joints a bit for me to be going purple and blotchy, with trembling limbs!

I found I really needed online support at that time so I would urge you to be here as often as you need.
I will be thinking of you.
x Lola
 

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Hi - im no expert at all but i would say if you are very nervous make sure thats the first thing you say to him when you go in - that you are nervous and worried you will get muddled up. He then knows exactly how you feel and you will probably find he will respond kindly and make you feel immediately more at ease for having got that out in the open. I do this with my doctor and i feel that gives us an immediate understanding. Good luck....
 
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