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Discussion Starter #1
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 Puzzled! Well nobody gets "cured" of Lupus so if Dr. Hughes is sure you had it, it would mean you still do. Most Docs. at St. Thomas' are not too hung up on blood results, but I do know of one who is the exception.
It took years for my bloods to become positive.
Maybe a visit privately to Prof. Hughes would be a good start point.
x Lola
 

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Discussion Starter #3
Thanks!

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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Welcome to the forum Puzzled !

It sounds as if your lupus has been grumbling away all these years and now has flared in the sneaky way it can do. :(

It is of course ridiculous to decide that a person doesn't have lupus because an ANA goes negative after treatment. It sounds as if the sooner you get this sorted out and start treatment the better. I am not sure whether you need a GP's referral to go privately to the London Lupus Centre but it is always a good idea to to have a sound relationship with your GP who will be prescribing for you and of course if you want a referral to a specialist whether at St Thomas' or anywhere else on the NHS. You should be seen within 3 months at St Thomas'. I think the wait is a couple of weeks at the LLC depending who you see.

All the doctors at the London Lupus Centre have been picked by Dr Hughes ( I suppose so anyway), who heads that team after retiring from the NHS. Several of them also work at St Thomas' and I haven't heard a bad word about any of those or about those who are lupus specialists elsewhere than St Thomas'. There is the one Lola mentions at St Thomas' who doesn't seem on quite the same page as the others, shall we say.

The GP can do a complete blood count, a urine test and an ANA.
It would be a good idea to get thyroid, diabetes and B12 checked at the same time.
I can't imagine that in the circumstances your GP will prove difficult. Everybody who knows anything knows that lupus doesn't really go away and can raise its ugly head anytime if you are unlucky, even after years of remission.

I am glad you found your way here. I know exactly what you mean about the value of support forums and the huge increase in knowledge and treatments - I was first diagnosed about 36 years ago but had to wait 26 years to get effective treatment and got my lucky break through an online forum contact after I had long given up hope of improvement.

Let us know how you get on and good luck ! :)

Clare
 

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Hello again

I forgot to say that if it isn't lupus there is something else very wrong that needs investigating but lupus is the obvious thing to suspect.
:)
Clare
 

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Discussion Starter #6
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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I just want to reassure you that it's not ridiculous to trust your doctor's judgment and rely on a "fancy new" test for SLE - back in 1989! The culture of society has changed in the last 20 years from trusting that your doctor knows best to openly exchanging and researching information on this wonderful resource known as the web! :)

Don't beat yourself up over this - I think many people probably had the same thing happen to them over many years time.

And you're right, it is reassuring that you're still here and ready to carry on the fight and get some proper treatment again! Take care and welcome to the site.

PS Women with lupus do tend to get ovarian cysts at a much higher rate than non-SLE patients. That could be related to lupus too.
 

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Hello Puzzled,
I am really not the best person to ask about ANA tests etc. I would hate to tell you the wrong thing. I am sure others here will answer this properly for you.
x Lola
 

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Hi Puzzled,
Hope you are having a good day and welcome to the site.

I was a student nurse in 1978 on a medical ward. In those days the rare case of lupus was occasionally admitted, bloated with the high doses of steroids (seemed to be the only drug used ) and not expected to make old bones. Nobody knew very much else about the disease:eek:
I am very glad that you have survived the experience and that things are very much different now.:)

I thing you need a review too.
Perhaps you could get your GP to do a full set of basic lupus bloods along with those already suggested.
By which I mean:-
Antibodies.anti dsDNA tec
Urea and electrolytes (checks many things including basic renal function}
Compliment levels
Inflamatory markers ......ESR {sed rate} and CRP
full blood count
These are the basic tests I have done three monthly.
My rheumy hasn't bothered with ANA since a positive diagnosis.

Very best of luck to you
stay in touch
 

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Hi Puzzled,

Welcome to a great place. Boy you have been dealing with uncertainty for years. I think the others here have given you great advice to follow.

You will find this forum and the people here like a second family. They really care about you and the support and knowledge is just great.

I am new to Lupus and APS but I did want to stop over and say welcome.

You have found a great place to hang out. I do hope you re visit a doctor and get the help you need to feel better.:wink2:
 

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Discussion Starter #11
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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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,
Katharine
 
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