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Discussion Starter · #1 ·
Given that lupus has no definitive test and that the many symptoms could indicate a wide range of other conditions. Given that lupus is extraordinarily hard to diagnose, what is the incidence of an incorrect positive diagnosis being given and followed by commencement of medication which would then not be appropriate? And how much damage could this do? Have any studies been done on this?

Bren
 

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Hallo Brenda and nice to meet you:p

The answer to your question is very complex - there are a lot of variables.

Some people who have a lupus diagnosis can be very certain indeed that it is correct. A positive skin biopsy, a positive kidney biopsy or a strong positive anti DNA antibody count are all pretty conclusive diagnostic pointers.

Other people will have been diagnosed using the ARC criteria. Strictly speaking these criiteria are not intended as a diagnostic tool, but as a selection tool for research definitions of SLE. Still if someone has more than 4 ARC criteria the statistical probability that they have lupus is very high indeed. Generally about 96% certainty.

See
http://www.aafp.org/afp/20031201/2179.pdf

Then the issue is - is it lupus or a different connective tissue disease? A rheumatologist may not be certain that it is lupus, but may be convinced that there is a connective tissue disease of some sort. These diseases are very close to each other. Especially in the beginning, it doesn't matter too much if the diagnosis is correct - is it UCTD, SLE or MCTD or sjogrens? Plaquenil is the first choice of treatment for all of these diagnosis, and with close monitoring by a good rheumatologist even if the disease course alters and a different diagnosis becomes more appropriate it doesn't mater because the initial treatment was the right one.

There is another group of people who have probably been misdiagnosed by inadequate medical assessment. Occasionally someone posts here saying their GP says they have lupus because their ANA was positive. Most people with a positive ANA don't have lupus, so if no further investigation was done, there is good reason to be highly suspicious of a diagnosis so carelesly handed out. Also, a rheumatologist should diagnose lupus ideally as they have the most experiance in this area. Still, most GP's don't prescribe treatmetent for lupus unless guided by a rheumatologist so usually the confusion gets sorted out in time.

Probably though, there are more people who do have lupus but no diagnosis or treatment than the other way around - ir no lupus but a diagnosis and inappropriate treatment. Typically we hear from people with CFS or fibromyalgia who were ignored for years before finally being diagnosed with lupus.

Does it matter?

Yes of course.

But in general the dubious diagnosis are for people who have very mild disease. They are more likely to be treated with NSAIDS and pain killers and maybe plaquenil, all of which are relatively safe medications.

I suspect that for those sick enough to need immunosupressants there is very little diagnostic doubt or room for error. Mostly people with severe SLE have signs and symptoms in abundance and it is quite clear that treatment is appropriate.

Does this help?

X C
 

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Discussion Starter · #3 ·
cath;519682 said:
Hallo Brenda and nice to meet you:p

The answer to your question is very complex - there are a lot of variables.

Does this help?

X C
It does indeed, Cath, and I thank you very much for such an informative and reassuring reply.

I believe I am fortunate in that the new GP I saw recently is very thorough and efficient (if not warm and fuzzy) and I appear to be in safe hands. After reading many of the forum entries here, I decided I would make a good record of my family history, my past medical history and the fluctuating symptoms that have been presenting over a period of between a few months back to, possibly, four years and longer. These symptoms have not clicked in my mind to be anything other than the vague sorts of things that happen from time to time but may, I see, be important. Some are those which I have asked doctors about from time to time but there has never been any importance attached to any of them. And, indeed, maybe they aren't important.

Now, a couple more questions:

I did ask previously about a breast lump but can't find my query on the forum so perhaps I wrote it and didn't send it. If this is a repeat, I apologise.

After recently experience what felt like 'something not quite right' under my left axilla, aforementioned doctor gave me a thorough physical and sent me off for a mammogram and ultrasound. I was correct, something is not right although that something appears to be a fibrous mass with no indication of malignancy. The doctor has ordered a biopsy, nevertheless. My question is: is there any connection between fibrous masses and lupus.

The second questions is about burning lips. For a long time, I have had recurring episodes of very red, very hot lips. So hot at times, they feel as if they've been dipped in chilli powder. The redness now extends beyond the margins of the lips and doesn't seem to go away. No doctor I have asked about this has the foggiest idea what causes it. If anyone has any thoughts on this, I would be very interested.

Bren
 
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