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Hi from puzzled person

523 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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Hi Lola

Thanks so much. Interestingly, the time my diagnosis was "removed" was the only occasion on which I didn't see Professor Hughes - and instead saw a doctor I hadn't seen before together with a bunch of medical students.

I think I'll start the process again, if only to check things out properly. Do you happen to know which of the ANA or the Anti-DNA is considered the more accurate in diagnosing lupus? My Anti-DNA's were usually (though not always) positive but it was the ANA (the first time that I'd had that test as we're talking so long ago now) which came back negative and led to the withdrawal of the diagnosis.

Thanks again for your input. I hadn't thought I was "cured" as, when I was diagnosed all those years ago, the prognosis was terrible and cures seemed a very long way off, but I just thought that my original diagnosis must have been a mistake and that this ANA test categorically proved it. I feel stupid now given how many years Professor Hughes thought I had it - should have trusted his opinion and argued the case back then, I guess! Mind you, given that I've plodded on with all the same symptoms and no real treatment ever since, I guess that might encourage people who've just been diagnosed and and are scared. When I was diagnosed in 78, lupus was perceived as a death sentence, and that seems to be far from the case these days - so at least that's something!
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Thanks very much. It does seem ridiculous now I come to think of it! Embarrassingly, I have ascribed everything since the diagnosis was withdrawn to neurosis and imagination! I'll try and find out how much a private appointment with Prof Hughes costs and maybe book myself in.

I'll also try my GP again. Thyroid tests have shown an unexplained problem for a number of years, but diabetes tests have come back okay. Haven't had an ANA or Anti-DNA for years, or a B12 or urine test. Think I have rather buried my head in the sand and feel a bit of an idiot now!

Hopefully treatment has also become more sophisticated in the years I've been out of the loop? I has severe allergic reactions to almost everything I was prescribed back then, especially plaquenil and ended up simply on huge doses of enteric-coated aspirin for the joint pain and the odd course of antibiotics or steroids. As it was originally thought that my lupus might have been caused by a massive reaction to penicillin as a child, it all became a bit worrying when I kept on reacting to things.

Anyway, it all does look a lot more positive now than it did then, which I hope will encourage those people facing diagnoses for the first time, anyway, and this site is great news for lupus sufferers!
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Thanks so much to you all!

This is SUCH a fantastic site. Very grateful for all your input and for making me feel less of an idiot too. I shall head off to my GP and see what happens, whilst hoping they don't view the tests as a waste of their resources of course ;-) Will let you know how I get on and many many thanks again for all the really useful advice - I've never even heard of some of these tests! Mind you, I do hope that my situation will encourage some of your members who've just been diagnosed, in that I've been plodding along for years without treatment other than for the individual symptoms - so hopefully that'll reassure them during the often-lengthy waits for diagnosis, and make it all a bit less scary! Also many thanks for the tip about cysts. I have had so many over the years, both ovarian and breast, that it's good to know there may be a reason for that too.....
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