Sticky Blood-Hughes Syndrome Support
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First Rheumy Appt any ides what to expect?

Hi all, its been a while since I last asked a question, so just to give you an update, after a rubbish first appointment with my haematologist, I have had a second appointment with her and have been formally diagnosed with APS. Have had a brain scan to check for TIA's due to some of my symptoms but thankfully all clear on that score. She has now referred me to a dermatologist as she wants a skin biopsy done - why, i'm not too sure.

Anyway, today is my Rheumatologist appointment, and I have no idea what to expect, so any ideas from previous first visits would be great :)

I have printed off a long list of my symptoms for both the APS and lupus so as I dont forget to mention anything.

Thanks in advance :)

6 Replies

Taking the list of symptoms is a good thing along with a bullet point list of past medical history, names and contacts of any Doctors treating you for other conditions and what medications you are taking with the dose.

I lay it out in a document like a CV with my name address, tel number and NHS number on the top and then list each condition I have with the Doctor who I am under with his details. I follow that with my medical history which is just date, event and result - so it could be 01/02/13 - X-ray of ? Result ?.

I just give the Doctor a copy when I go into the room which he then browses through as he asks questions and so far all have said what a good idea it is. It also serves as a good reminder for you and means you can relax knowing that you won't have forgotten anything if asked especially if you are feeling a little anxious.

Good luck, I'm sure it will go we'll and please let us know how it went. X


Hi, just a quick update, yesterday bitter sweet. Have had the formal diagnosis of SLE now as well but the Rheumy consultant I saw yesterday was fantastic!!!

He was very well informed on the condition as well APS, far more advice and information than my haematologist who just seems like shes far too busy most of the time. He is making me an appointment to meet the lupus nurse within the next fornight and will be starting me on hydroxycholorquine (i think I have spelt that correctly). My ANA, anti-ds DNA are both continously positive but the complement test was within normal realms. But the constant positives, history and ongoing symptoms have all lead him to make the diagnosis.

So pleased to have a consutant on board who not only is friendly and helpful, but willing to take the time to listen and also explain. Hopefully now I can start making some progress xx


Good the drug you speak of is known as 'Plaquenil' it can take many many weeks to start working but most do very well on it. My daughter has been on it for months now with some success! Mary F x


I hope this is the case for me, as these stupid comditions are now severley affecting my studying for a degree, I have no concentration and when I do I have no energy to complete my assignments. Ive already had to have 1 extension and havent even got half way through. xx


Hi there, I also have my medical history in bullet points, and who is doing what with me, when and how etc. Also short bullet points of symptoms also. I find it stops me leaving and arriving home only to remember certain questions I wanted to asked.... if seems to trigger the questions and answers I need most of the time. Good luck. Mary F x


Thanks both of you :), hadn't thought to put any further info on it, not sure i'll have time to do that today before my appt but will definately add it after i've been.

I'll let you know how it goes later xx


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