Errors among diagnosed lupus patients

[Naladog]

Hello everyone,

Do you know if this type of test is currently done for the diagnosis of lupus, please?

the-rheumatologist.org/arti...

Thank you very much.

Best wishes

[KayHimm]

Naladog -

Excellent article. Thanks for posting this. I can’t answer your question but know that ANA testing has been variable in labs and that there are different ways of doing the test. It sounds like, based on this article, that the problem is the labs not reporting something properly. That leads to the false negative ANA. They are trying to get consistency regarding the test.

It is really complicated. Maybe others have a better understanding. It doesn’t look like a type of ANA testing but a problem with current testing.

K

[Boudica1 in reply to KayHimm]

I agree 💯 with you, it does seem to be more of a problem with the labs. The lab test results for me come back positive or negative, no numbers at all. I have no idea why it seems that is how it's recorded. I know that there is supposed to be a international guideline for the gold star diagnosis critical standard for the clinical research side of things but if people full just short of this magical blood test they are Rolexed in my experience in my local health authority.

Doesn't matter if you have multiple physical symptoms and signs that's it. No gold standard blood tests no other tests are done to help with a diagnosis. End of.

If you're lucky you may get some sort of treatment but generally left to GPs to try and get things sorted or worse made to feel like it's in your head because you're complicated.

Going through the complicated thing at the moment with GP who can't get the help they need to do what's right for me.

So I'm hitting a brick wall.

Where do people who are like me fit, get help or even a proper diagnosis and just how many times do we have to be tested and rested over and over. I stupidly thought if you tested positive that was it not repeated tests and then "oh no you don't". It's a very unfunny Pantomime and leaves me thinking what's the point. To prove that I'm unwell? I know that without a stupid blood test or doctors telling me.

♥️

[heatherevans28]

ANA is one of many tests done when diagnosing lupus, but I'm unsure where has this issue I'm afraid. Plenty of people are diagnosed without a positive ANA and it being positive does not equate to a lupus diagnosis, so its always the full picture that they look at including symptoms and all other test results.

Hope this helps.

[Boudica1 in reply to heatherevans28]

It appears to be the local health authority you are in.

I have a great Rheumy who has treated me but sadly his hands are tied diagnostically. It appears you HAVE to HAVE the gold star blood tests for a firm diagnosis and apparently it has to be everytime they test your blood.

So far I seem to have a diagnosis of......, Wait for it........ Sero-negative Sjogren's or Sicca Sjogren's.

At the same time I am repeatedly having blood tests for Lupus. Ah but so far ANA is negative since the first few but the complement c3 &C4 have been consistently dropping so c3 is low and C4 on the very last number of the " normal" range.

Other blood tests results are also often out of the "normal" range as well but according to the GP unless they get to a certain level the hospital won't do anything.

In other words in my health authority area unless you get to a crisis level don't expect a confirmed diagnosis.

Yes it's very frustrating and upsetting but you can get some sort of treatment. Just not a confirmation of your disease so that if people ask what's the matter with you... Hmmmm now what symptom is the worse today and no I'm not a hypochondriac. I really do have all these nasty and stupid symptoms one way or another day to day.

I've given up on the blood tests side of things and don't even care anymore of a diagnosis as to why/what is causing the problems. The doctors are doing what they can and other than that I have to try and treat myself and sod the nosy judgemental ordinary people who think they are experts 😜😂😂😂😂😂.

♥️💞