Can anyone advise how to get diagnosed?

Lupus has been mentioned to me over and over by various experts but never officially diagnosed. As time has gone by more and more symptoms occur and point back to lupus but I feel the the experts just can not be bothered. I have a new GP who I am seeing tomorrow and I'm writing a list of things to tell her. Any advice would be appreciated.



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6 Replies

  • Hello Tinkerjack1912,

    If you click on the "Home" tab, you will find there are lots of LupusUK leaflets there for download, including one on diagnosis. Here they are lupusuk.org.uk/publications/

    My suggestions would be:

    Start the appointment by saying clearly what you want to get out of it. For example - "I have been experiencing a number of problems which I suspect might be lupus or something like it. I've seen several doctors, but don't feel that they have addressed this issue properly. So my main question for today is to have a plan for ruling that diagnosis in or out."

    Finish the consultation by checking the plan meets your objective e.g, "So the plan is that I am to see the practice nurse to get bloods tested for ANA antibodies, I am to keep a daily record of fatigue symptoms and I will come back to see you in 2 weeks time?"

    I'd add that most of us here took a long time to get diagnosed, and many of us are still struggling with unclear or provisional diagnoses, so you are not alone there!

    Good luck anyway x

  • Thank-you x

  • Can't add much to this excellent advice from Whisperit, apart from that you take any photos of rashes if you have them and add affects of sunlight and cold weather on your skin and symptoms generally to the suggested journal.

    Plus they should test other autoantibodies such as Rheumatoid factor, full blood count, inflammatory markers and thyroid bloods (unless you are already being monitored for thyroid disease), B12 and Vitamin D at same time as ANA.

    I would say all these tests are equally important if you have possible autoimmunity. Hopefully the GP will agree. Good luck!

  • Thank-you

  • I saw the dr yesterday and she is getting my bloods done again, it seems mad but even after the "professionals" considering Lupus they never tested for it. Anyway I've got bloods next week and back to the dr the week after that. So watch this space.

  • I hope that you get some answers soon. Good luck with the tests and keep us updated.

    If you need any more information about lupus and how it is diagnosed you can request or download one of our free packs at lupusuk.org.uk/request-info...

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