Confused with results

[Cyprusgal]

I am so confused with my blood results that are coming through?! I went to see the rheumatologist last Thursday and she diagnosed me with Lupus based on my positive ds-DNA results and my symptoms she also said I have possible Sjogrens along with the Lupus. I have had lots more blood tests run and some of the blood work that is coming through is negative!? ENA Screen, CCP, PTH I have quite a few more to come through but I am so confused on the negative ones so far. Can anyone help or advise? Thanks

[PMRpro]

Negative results aren't necessarily meaning there is nothing there. In order to make a correct diagnosis they build up a picture using the blood tests and symptoms - a + in certain boxes with a - in others shows which it might be.

This

rheumatoidarthritis.org/ra/...

explains the CCP test you mention in people English (as opposed to the medical variety!).

But that's why you are seeing a specialist - they should know what the patterns are.

[Cyprusgal in reply to PMRpro]

Thank you, for the reply it's a bit daunting taking everything in and understanding all the tests you have to have 😦😘

[KayHimm]

I really don’t think the rheumatologist would have told you that you have lupus without being certain. They had enough information with your initial labs — ds DNA are very specific for lupus — and symptoms to be certain. The other tests are to further understand your antibody profile. I don’t totally understand it, but I have had all of those tests too. I know they do some tests to see potential for coagulation problems and maybe others indicate they need to watch for certain symptoms.

So maybe you should hear that as a good thing that no further testing has been positive. The doctor can explain all of this to you.

Maybe others have a different view and experience. But it would seem highly unusual and irresponsible for a doctor to give a diagnosis like lupus without being certain. They might say they “need more tests” or they are « suspecting » but not a definite diagnosis.

Hope you get clarification. Must be hard to once again be uncertain.

K

[Cyprusgal in reply to KayHimm]

Thank you, for the reply everything is a bit daunting at the moment 😦 but I am sure it will get better once I understand more 😘

[KayHimm in reply to Cyprusgal]

Yes, you are getting hit with a lot — the lupus diagnosis, additional testing and an emergency room visit. Deep breaths .. and reach out for support whenever you feel you need it.

Kx

[Hidden]

Lupus test results from various sources:

hopkinslupus.org/lupus-test...

mayoclinic.org/diseases-con...

lupus.org/resources/lab-tes...

Note they are for lupus and not specifically for RA.

Unfortunately diagnosis info for lupus is not given in detail by Lupus UK:

lupusuk.org.uk/diagnosis/

Regards,

Alexa321

[KayHimm in reply to Hidden]

That Hopkins information is really easy to understand. Should be helpful to a lot of people!

[Cyprusgal in reply to Hidden]

Thank you, for the reply and all the information things are a bit daunting at the moment 😘

[Cyprusgal]

Thank you all, sorry I didn't respond yesterday ended up having to have a check up in A&E with a chest Xray and clotting due to having some severe pains since Sunday but all turned out ok 😊 I think, I am learning what can effect you and the symptoms you should look for going forward.

I have had to have quite a few more bloods done and the doctors ordered a full body scan now, due to me having a problem with my WBC and Lymphocytes the last 4 blood tests, these have been rising and are way above the normal levels they should be so more investigation is needed to see why. So lots going on along with all the tests and been proded and poked but hopefully we should have a clearer picture next week 😊 then treatment can start. You do get blown away with the results that come through and think omg what is happening! Is that right? but having people on here to help and support and explain, because each one of you live it, is absolutely priceless and I for one thank you so much 😘😘