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LUpus Patients Understanding and Support
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Negative ANA?

Hi everyone. New here and I have a few questions. I am currently being evaluated for lupus. For years Ive had all over joint pain without damage, extreme fatigue, tingling all over my body,raynauds, weird scaley patches that pop up all over and a reaction to the sun that looks like a sunburn across my face(but disappears after being out of the sun for a while.My primary care ran some tests after I came in with a myriad of other symptoms. a few of my tests came back abnormal(CRP,ESR, anion gap,alkaline phosphatase, and total protein)..also I found that I am very anemic. I was put on iron over a year ago due to iron deficiency and that was that. After this test my iron was even lower so I was given IV iron treatments. The docs initial thought was lupus due to the symptoms but when the ANA came back negative I think she dismissed the idea but referred me to a rheumatologist. I have had these same symptoms for years and recently its gotten much worse. The anemia I discovered is what is called normocytic,normochromic. Appaently caused by a chronic underlying disease or inflammation. My major question is..has anyone went into rheum with these symptoms and a negative ANA and still been diagnosed with lupus? Ive been at this for over 10 yrs and I keep getting blown off.Now that I finally have proof that at least somethings going on..I want to figure it out.

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Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

Many rheumatologists are not expert in diagnosing or treating SLE. Many patients have "sero-negative" lupus ie the ANA is negative. Blood tests can and do change which is why SLE should be diagnosed clinically, that is, based on the patient's symptoms over time.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people.

There you will find a paper written by Dr Graham RV Hughes entitled: Is it lupus? The St Thomas' Hospital 'Alternative Criteria' in which he argues that unless a doctor is looking for lupus, it will be missed.


There is also an additional problem. Many doctors use a classification system, designed to ensure the same kind of patient is used in clinical studies, to diagnose individual patients. You will often hear: you don't have lupus because you don't have 4/11 criteria. This is nonsense! There are many different kind of blood tests in order to understand what might be going on in a patient, but you need to see a lupus specialist.

If you are interested, registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

Please use the following to complete the Date of Birth entry: nn-nn-nnnn where n=number. Thus, if your birthday is 5th May 1968, enter: 05-05-1968. Use the “-“ separator and not the “/“.

Finally, please go to: lupus-support.org/ and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!


Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

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