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Hi from puzzled person

527 Views 11 Replies 7 Participants Last post by  Katharine
Hi everyone. What a great site this is. I was first diagnosed with lupus in 1978 and was treated by Graham Hughes at the Hammersmith and later St Thomas's. Had various positive Anti-DNA tests and others although they would sometimes come back negative. At that time, Dr Hughes told me that this confusing picture was common.

Some years later, around 1989 I think, I went to St Thomas's and saw some other doctors who ran the usual tests - the only difference was that this time they did the ANA test and, when that came back negative, apparently told my GP that I therefore did not have lupus. So since then, I've gone on that assumption and tended to assume that all my intermittent and continuing symptoms must be psychosomatic, and rarely bother my GP with them at all.

However, in the last few years, the list of new symptoms has grown and so many of them seem typical of what is now known about lupus (which seems to be SO much more than seemed to be known when I was first diagnosed) that I can't help feeling that I still have the wretched illness, and that one negative ANA test surely shouldn't have been enough to change a diagnosis based on far more tests and 11 years of treatment.

I now have severe dry eye, urticaria, really bad dizziness and insomnia, headaches, depression and anxiety, unexplained early-onset deafness, several problematic thyroid function tests, swollen glands and sores in the nose - as well as all the old longstanding symptoms of aching and painful joints, extreme fatigue, random rashes, and bowel problems. All of which could be neurotic of course, but since reading the stories and variety of symptoms of many of you who have been more-recently diagnosed, it seems that maybe I should be heading back to my GP and starting the whole testing/diagnosis thing all over again. I have also had suspected ovarian cancer and endless cysts - all of which seem (thankfully) to disappear just before I have to have surgery - despite being measured and seen on scans. It's all very odd. What do you guys think? Any opinions/guidance very welcome. (Of course, I know that in some ways, a name for something doesn't actually alter anything - but in my case, knowing that it's something which I came to terms with some 30 years ago would be better than thinking my body's packing up for some other reason!)

Look forward to hearing from you and many, many congrats to everyone involved with this great site. I so wish there'd been something like it in 1978!
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Hello there and welcome :)

I don't have anything to add to the excellent advice you have already received but just wanted to say that, as far as I know, Dr Hughes no longer "sees" patients (with the exception of truly difficult/unusual cases - I suppose with research interest), however I think it is possible to e-mail him and, as you were a patient before, he may be able to tell you who to see to clear up the situation which, after all, came about through a "problem" on his team (if one can put it that way).

I have heard a lot of good of nearly all the St Thom's specialists.

all the best,
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