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Hello,
I'm New here and hoping someone can help me out. I had my blood results come back with a Positive ANA and Positive dsDNA. I don't see a number for the ANA but the dsDNA shows 19. My primary health DR said that with my physical symptoms (Fatigue, general ill feeling, Hair loss, sensitivity to light, skin rash, swollen lymph nodes mouth sores, skin- patch skin color, fingers that change color when cold, digestive track pain) and positive blood work that yes, I have lupus.... What I don't know is do I need to wait for the specialist to confirm before I know for sure I have Lupus or with all my symptoms and the positive blood test it's already confirmed? I have my first apt with the rheumatologist on July 1st. Also, there is a note on my blood work that states at the higher level of dsDNA this usually associated with Lupus nephritis. Does anyone know if "19" is a high number?

As you can tell I really know nothing. I've done a lot of web searches and everything leads back to a confirmed yes, it's Lupus.

What will my first apt be like at the specialist?

Can anyone help me?
Thanks so much :)
Welcome KM to the boards. I think we can help you. You do have several symptoms suggestive of lupus, plus two tests that support the diagnosis. 19 is not very high on the dsDNA, and many people with lupus have low numbers like this and do not have kidney involvement. This level fluctuates some, but for reference sake, some people have anti-dsDNA in the 100-400 range when they have kidney involvement. Not all Drs. agree on things, and rheumatologists are often hesitant to give out diagnoses. So it is possible the rheum will just not make a commitment. He/she will likely order more blood tests, go over your history in detail, examine you, and then follow-up on the new test results before giving you any opinion. The anti-dsDNA is very specific for lupus, but there are additional tests that can help confirm it as well, like anti-Smith, low complement, low WBC, etc. I would recommend you get copies of ALL your labs and reports, and start a notebook for your own file, to keep track over time. Learn all you can about lupus so you can feel informed and help yourself. There are good books at the library, bookstores, and good online resources, as well as lupus organizations and support groups. We are here too to help with questions and offer support. I hope your appointment goes well, and Dr starts you on a med, usually Placquenil, to help with symptoms. Please keep in touch as you progress.
Hi Ladybud! Thank you so much for your reply. I will update my post once I know what the DR is going to do. I sure hope he starts me on meds. I'm so tired of feeling like this. I know the meds wont take it all away but I hope it helps a little. At this point, every little bit helps, right :)
Hope you have a wonderful day.
Hi & welcome. Rheumatologists use a set of 11 criteria established by the American College of Rheumatology (ACR) to assess patients for lupus. You may find the criteria in one of the "sticky posts" (permanent info posts) located aright bove the user threads. Generally, but not always, you must meet 4 or more to sustain the diagnosis; but they don't have to be met simultaneously, they may be met over time. Think of checking each off, once met, in indelible ink.

I agree with what Ladybud said, that the rheum may not diagnose you right away. They usually redo all tests with labs of their own choosing (not all labs are experts with these difficult tests), take a LIFETIME medical history, etc. before making the call. This approach is maddening to the patient, but it's sound medicine. Doctors who do otherwise aren't doing their jobs.

Labs and reference ranges differ, but my lab would consider 19 to be negative. Also, if your BUN and Creatinine on your standard labs are normal, those are excellent signs that your kidneys are functioning properly.

What's your skin rash look & feel like? There's also a "sticky" on skin rashes that you may want to read. There are something like 12-15 lupus rashes, but only two (the most common ones) are listed on the criteria: discoid (scar &/or depigment) and malar (facial butterfly).

There are 15 or more antibodies seen in lupus. Anti-ds-DNA and anti-Sm are the only two considered VERY specific to lupus, so those are the only two listed. Others can appear in lupus OR some other condition. For example, anti-Ro is seen in both lupus and Sjogren's.

One other thing I'd want done: have thyroid levels tested. Hypothyroidism can cause a positive ANA, plus it can co-exist with lupus---so it makes sense to rule it in/out.

You probably won't get answers immediately, so what you're looking for from your appt. is a real good start, so here's wishing you one! Let us know how you make out. Warm wishes, Vee

P.S. I visited my local library, borrowed lupus books, and just scanned the sections that seemed to pertain to me, otherwise I'd have been overwhelmed.





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