Disappointed

*UPDATE*

I had my first appointment at Guys Lupus clinic a couple of weeks ago and I was very disappointed, I guess I was expecting something different from normal rhuematology depts but unfortuantely not, it's basically down to bloods, which I have just found out are fine. The doctor even thought that it was incidental when I said I felt better ( energy, aches, throbbing, brain, head sores etc all better ) after taking a recent course of chloroquine.

I am now giving up on getting a diagnosis and will self medicate as I cannot continue like this, I have found a source for meds but if anyone can recommend please pm me.

2 Replies

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  • I am so sorry that your experience was disappointing. The Lupus Clinic at St Thomas' under Dr David D'Cruz is what I would recommend.

    You can ask your GP to give you a referral to see Dr David D'Cruz who is also the Director. Of course, you would also see a junior doctor but you are entitled to see your consultant - and you may not have seen a consultant but a junior doctor.

    If you have private insurance (which many of us do not) you can see a consultant without any problem. Unfortunately, the NHS is oversubscribed and there are not enough doctors/lupus specialists. Not all rheumatologists are expert in lupus and this is the problem.

    I know you feel like giving up but getting a diagnosis IS difficult and can take a long time. I saw an expert and it took him 18 months because there is no one blood test and doctor often "wait and see" what develops. It is better (although frustrating) not to give a diagnosis than to give a wrong diagnosis.

    I would go to your GP and talk about what you are concerned about.

    We can talk more at any time.

    With good wishes,

    Ros

  • Lupus support is right - follow that advice. After a year I was put on hydroxychloroquine and feel better after 4 weeks. There can be a strange coolness from some doctors - my main Doc is reluctant to say Discoid Lupus yet but I take the Administrators point. Stick in there it's a long and winding road to diagnosis! That you feel better is so good. Cas70

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