Do I have Lupus?

[fastermatt]

So far I have failed all of the Anti DNA tests. My primary ran a bunch of tests but he is sending me to a rheumatologist to make it official. I will be seen in two weeks and my symptoms so far are massive fatigue, small joint pain, itching all over, bloody nose for two months, really tired and mostly in constant pain. But I don’t have a rash on my face and it seems like that’s almost mandatory. If I don’t have Lupus I can’t imagine what else it may be. Any thoughts???

[lupus-support1 Administrator]

Many patients have "normal" or "unremarkable" blood tests. I am also sero-negative, but diagnosed by Prof Graham RV Hughes. There is an article you may find helpful. It is called, "Is it Lupus? The St.Thomas' Hospital 'Alternative Criteria'" which can be found at the LuPUS Message Board:

lupus-support.org/LuPUSMB/i...

Blood tests can and do frequently change. However, you cannot diagnose SLE based solely on blood tests. It is diagnosed clinically,which is why you need to see a lupus specialist. Not all rheumatologists are lupus specialists. It does sound, however,that your doctor is actively looking for SLE, which is important.

To access the paper, you will need to register (free) so please let me know if you have problems.

You can contact me anytime.

With good wishes,

Ros

[Fennella02]

Hidden , I also have sero neg lupus and have had it for over 25 years. At the time of diagnosis, my lupus was so 'textbook' that my rheumatologist used me for medical photos for her university teaching.

fastermatt , lupus can present in many different ways and no 2 cases are exactly alike. To complicate things, there can be a vast amount of overlap between auto-immune diseases. You need a good rheumatologist who is experienced and open minded. It can take a while to get diagnosed but try not to lose heart - you will get to the bottom of the mystery! Xx

[KayHimm]

I agree that you should address the itching with the rheumatologist when you have your consultation. I have developed itching along with heat sensitivity and my doctors are exploring mast cell activation, which can co-exist with autoimmune disorders. The theory is the auto-antibodies attack the mast cells. Good that your primary doctor is sending you to the rheumatologist. These diagnoses are complicated and the rheumatologist will be asking lots of questions and maybe doing tests that a primary doctor does not do.