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Coleman,

Welcome to the Lupus Site. Oh my what a journey you have already been on. I wish I could tell you I have never heard something like what you have been through before but here on this site you are not unique. I hope that gives you a little relief. It is very rare to have ana negative lupus. Less than 3% I believe. When it is negative with Lupus it usually falls into a few categories like long term prednisone use for another health issue. Chemotherapy treatments for Cancer. There are also times the ana will be negative but some of the other tests on the "lupus" panel come back positive. Most of the time the lab won't run the "ena" panel without a positive ana, so a doctor would need to write the orders such that all the tests are run regardless.

Another factor can be simply that the lupus was developing and when the Rheumatologist ran the blood tests it was negative and could now test positive. I don't know if you have had the lupus panel run multiple times or not. Your hematologist could run all the blood tests ahead of your appointment with another Rheumatologist. Try and see if you can research who the lupus specialists are in your area and then get referred to one of them. Only 20% of all Rheumatologists diagnose 80% of all lupus cases in the USA and the numbers are likely similar in other countries.

I do have a positive ana but that is pretty much it. I have an overlap condition of Lupus with Scleroderma and RA. If I went to the local rheumy I would still be begging for treatment. I drive into the closest large city to see a lupus specialist and it is worth every minute of the drive.

Have you looked over the list of lupus criteria and symptoms posted at the top of this forum? There is also a post with the blood tests used, it may be in the tests and procedures forum if it is not in this one.

Let us know how you get on.

Take care,
Karen
 
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