LUpus Patients Understanding and Support

Do I have Lupus?

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???

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There is such a thing as sero-negative Lupus! Im glad your GP is referring you to a specialist in any case but I do hope its one that has experience in Lupus or other similar autoimmune disease. Interesting you have itching. Do you have any rash, urticaria or demographic wheals? I wasn't aware that Lupus has itching as a symptom but I could be wrong. This could be more like a mast cell problem. Can the bloody nose be down to dryness and if so are you experiencing this on any other part of your body, especially the eyes? You may want to look up Sjogrens Syndrome which is a very common autoimmune condition and runs along side others too. Plaquenil is often prescribed to help with the fatigue and body aches.

If you get to the bottom of it Id be interested to know what they say is the cause of the itching. I too have had this for 5 months and also have other autoimmune conditions - but so far NOT Lupus!

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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

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APsnotFab, 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

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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.

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