Diagnosis

[1toffee1878]

When diagnosed with lupus is this confirmed purely just by the blood test or have people been diagnosed by other symptoms and a negative blood test? My doctor constantly refers back to a negative blood test when I suggest I may have lupus.

[EOLHPC]

Hello toffee

Good question

Here is a link to a popular recent discussion here about lupus diagnostic criteria. This post includes a photo of the official criteria list my brill lupus clinic follows:

healthunlocked.com/lupusuk/...

I hope something in there helps

Your doctor possibly doesn't know as much about this as a more immune dysfunction & connective tissue disorder expert/experienced doctor might/should..

Blood results are only part of official diagnostic criteria...and many of us are diagnosed with SLE despite being seroneg, so long as our other blood results & clinical signs/symptoms do fulfill required criteria

This subject is of BIG interest to almost everyone here on forum

🍀🍀🍀🍀 coco

[1toffee1878 in reply to EOLHPC]

Thanks coco, will read it with interest.........it seems it takes many years for many who suffer with this condition to be diagnosed. Too many 'blinkered' doctors and consultants who I know think we want a clinical problem and don't understand we just want to know what it is so we can manage it effectively.

Take care

Toffee

[RichardE in reply to EOLHPC]

Thanks Coco, don't know how I missed that previous interesting post.

With my current Rheumy refering to my HUVS as "poorly differentiated" I've started to get hold of notes and blood results etc from the time of my diagnosis to see why he might think this. Whilst personally I think I'll stick to the original diagnosis, I can see his point when I look at how I fit with the Lupus criteria.

To be fair to the professionals, these complicated autoimmune diseases must at times be a nightmare to diagnose and treat.

[EOLHPC in reply to RichardE]

👍👍👍👍🍀🍀🍀🍀

[EOLHPC in reply to RichardE]

Hi again Richard...just had a thought: did you see this recent discussion re the recently revised BSR SLE care guidelines? Because in there is a link to this ultra comprehensive BSR document, which I've found v helpful re understanding my diagnosis:

healthunlocked.com/lupusuk/...

But maybe you're already aware of this

[RichardE in reply to EOLHPC]

No Coco, I'd missed this one too !

Just taken a quick glance so far. The guidelines certainly have much more detail than other documents and papers that I've seen covering similar subject matter.

Many thanks

[droberts52]

Yes, I have heard the same thing for two years. Diagnosis/Systems !! Although I haven't really found a Rheumatologist that I actually care for...

[Manclady61]

Hi I had blood tests and biopsies taken from my scalp because of hair loss before I was diagnosed x

[driven]

There are some great medics out there but unfortunately quite a few who don't listen properly and have a very poor check list mentality which means they don't always have an interest in investigating things when the blood tests don't nail it for them which is often the case. I hope you find one of the good 'guys' and get some help. Wanting to know what is wrong is NOT the same as wanting something to be wrong and that is something a lot of doctors don't understand. The former is very positive and proactive. I think the latter is very rare. Good luck!

[Paul_Howard Partner LUPUS UK]

Hi 1toffee1878 ,

EOLHPC has provided you with some great information which I hope you found helpful. Many consultants do rely heavily on blood test results to make a diagnosis of lupus, but there are also those with a specialist interest in lupus who can sometimes make a diagnosis based on other criteria due to their additional experience with diagnosing and treating the condition.

Is it just your GP you are seeing at the moment, or have you been referred to a rheumatologist for further investigations? If you want to get a second opinion, you could ask to be referred to a rheumatologist who specialises in lupus. If you let me know what area you are in, I can provide you with information about any we may know nearby. (the same applies to you droberts52 ).

[1toffee1878 in reply to Paul_Howard]

Hi Paul,

I live in Dunstable Bedfordshire. Dealing with my GP only.

Many Thanks

Chris

[Paul_Howard Partner LUPUS UK in reply to 1toffee1878]

I believe you the specialists I know nearest to you would be the two LUPUS UK Centres of Excellence in London; UCLH and the Louise Coote Lupus Clinic at Guys and St Thomas'.

However, that doesn't mean that there aren't necessarily any good consultants near to you. Getting referred to a rheumatologist for further investigations would be a good start.

[1toffee1878 in reply to Paul_Howard]

Thanks for the info. Will probably wait or some symptoms to flare up before I take it further.

Cheers

Chris