First Rheumy Appt any ides what to expect?

[dragtalav]

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

[MaryF Administrator]

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

[dragtalav]

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

[dragtalav]

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

[MaryF Administrator in reply to dragtalav]

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

[dragtalav in reply to MaryF]

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