What should I ask Prof K tomorrow?

Having been summarily diagnosed and discharged by St Thomas's, I'm going to see Prof K at London Bridge tomorrow. I want to ask him whether I'm on appropriate treatment (clopidogrel), which of my symptoms I can reasonably expect to be down to the Hughes syndrome and what he makes of Dr S's observations that I have a non-specific low grade autoimmunity. Any other ideas? I'm taking my blood results (they'll weigh a tonne ;) ) and letters from St Thom's and I've made a list of my ongoing symptoms. Any other ideas please?

Hoping now that I don't feel as grotty tomorrow as I do today!

Thanks

Susie

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  • Hi there, well done you... I would write a list of events in bullet points from early years to date.. anything you can think of in short points... reactions to medications etc.. other relatives.. and take it with you, in order to trigger your memory, useful for you, and useful for them at the hospital. Best of luck. Mary F x

  • Thanks Mary :)

    Dr K is soooo lovely! He was so kind and reassuring. He discovered I have livedo, which I didn't even know and he was particularly concerned about my memory problems, which he described as severe. He wants me to have an MRI to check for lesions in the brain, as well as to have a whole bunch of bloods. He's going to ask my GP to refer me back to St Thomas's to see him so I can have the tests done on the NHS :) he also talked about a low level connective tissue disorder and fibromyalgia. He talked about me having meds for the pain and fatigue, so hopefully he can try some stuff out once I see him again.

    Is was so good to be taken seriously and not to feel like a hypochondriac! There was a bunch of other stuff but I'm so tired now I can't process it all. Money very well spent though :)

    Thanks for your encouragement on previous occasions to pursue this - I feel like I'm getting somewhere at last. Plus it's great that me and my sister can see the same consultant now and he can start joining up the dots for us. Yay!

    Susie

  • Im so happy for you, its lovely when it all comes together. I do hope your GP plays ball.....be polite but firm and stress the importance of being referred. :-)

  • Delighted for you. Its great to feel in the care of someone.e with such expertise who is So caring and nice.Ann

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