I am being treated by a new rheumatologist here in SC. He keeps telling me that I do not have Lupus because my ANA is consistently negative. When I was living in NY my rheumatologist there believed that I did, in fact, have Lupus even though my ANA was negative. It was diagnosed via a biopsy when they removed my diseased gall bladder. This new rheumi only agrees with this diagnosis because he (as fate would have it) know my previous NY rheumi. They did their internship together. But, he still does not believe that Negative ANA Lupus exists.

I have a lot of what is discussed below. Especially antiphisiploid antibody syndrome and Lupus Cerebritis.

There are a number of theories regarding this. Here are a few from the following web sites:

http://www.hss.org/professional-conditions_13436.asp

This one concludes that.....
The answer to the question, "Does ANA-negative lupus exist?" is technically "yes", with a large number of buts, and ifs, and whens. Another answer is that the question is not very important. It is never critical to say definitively that a given patient does or does not have lupus. What is important is to evaluate the current symptoms, to put the symptoms into an overall context that includes blood tests, duration of symptoms, other illnesses, and medications, and to develop a treatment plan based on the total information rather than on a blood test alone.

http://www.uklupus.co.uk/dwallace.html

The Lupus Site Exclusive - Interview with Daniel Wallace, M.D.
Daniel Wallace is the author of the hugely successful 'The Lupus Book', and is considered to be one of the world's leading lupus specialists.

Q - I often get emails from people who have negative blood tests (e.g. ANA, anti-ds DNA), and have therefore been told that they have not got lupus. What are your thoughts on this matter, does a negative test on one occasion necessarily mean that lupus can be ruled out?
A - ANA negative lupus is only seen in discoid lupus, antiphospholipid syndrome and patients who have had so much steroids or chemotherapy that their test becomes negative. Anti DNA is present in only half with lupus and is not definitive.

http://www.healthboards.com/boards/showthread.php?t=644293

lupus cerebritis?!?
I am 33 years old and have been sick for the last 12 years. I catch everything going around but on top of that I have been hospitalized more times than I can count for pyelonephritis (severe kidney infection), infected gallbladder that was removed, aseptic meningitis 4 times, bacterial meningitis, asthma, pneumonia, shingles, severe migraines that cause dementia and/or speech problems, and on and on. I have been told I also have a brain cyst. I was recently hospitalized for aseptic meningitis however now the doctors are saying it may not have been meningitis. When my spinal fluid was taken it was clear, at that point I was told it wasn't meningitis though I had a fever, neck stiffness, and a terrible headache. An hour later, after testing, I was told I did in fact have aseptic meningitis because my spinal fluid had 636 WBC. I was admitted to the hospital for 8 days during which time doctors finally tried to determine what exactly was wrong with me. Throughout the years I have heard diagnoses of fibromyalgia, MS, Lyme disease (even tho to my knowledge I have never been bitten by a tick), etc. I was also found to have low levels of potassium & they were scared of heart failure so I was put on the heart floor & strapped to a heart monitor. I received IV potassium the entire time I was in the hospital. I was also severely anemic. My spinal fluid came back positive for herpes simplex after 5 days but I have NEVER had any type of herpes outbreak-not even a cold sore.After the hospital stay I was sent to an immunologist who ran tons of additional tests and he said I had a low C4 but a negative ANA which led him to believe I have lupus cerebritis (which he said is central nervous system lupus). He has now referred me to a haematologist and a neurologist. (He said ANA was often negative in people with CNS lupus) I feel HORRIBLE everyday. My pain scale is constantly at a 7 or higher. My head hurts nonstop, my joints ache, I run a low grade fever off and on, I have "brain fog" as I can't seem to remember anything, sensitivity to sunlight (I get sick every time I am out in it...if out to long get the meningitis like symptoms)I have numbness & tingling in my left arm & leg constantly, I trip and almost fall a lot and weakness in my left side. When my head hurts really bad I also have a tendency to talk "gibberish". I hear normal words coming out however my family hears "gibberish" (just sounds not actual words...my mom describes it as me talking a foreign alien language)Does this diagnosis sound feasible? Anyone hear with lupus cerebritis who can tell me anything about it?I would appreciate any help you could give me....SOMEBODY PLEASE RESPOND WITH YOUR THOUGHTS...

Re: lupus cerebritis?!?
Did you book appts. with the rheumie & neurologist yet? I hope you're set to go on both. Hopefully you'll be evaluated for all possible conditions. I'm guessing (but I'm only a patient) that in addition to lupus, antiphospholipid syndrome, a blood clotting disorder, might also be in the ballpark. APS can exist "standalone", or it can co-exist with lupus. APS can cause migraines, miscarriages, low platelets, strokes, indicatives, lung problems, etc. FYI, there's a "sticky post" on APS at the top of the thread list & "stickies" on lupus, too. ("Stickies" are permanent info posts.)As far as ANA being negative in the past... In your shoes, I'd ask a lot of questions about this! e.g., 1. Can ANA rise & fall with flares? 2. Were you tested for specific auto antibodies? Or did your earlier doctors stop cold when they found your ANA was negative AT THAT TIME? (My understanding is that some doctors order the ANA *plus* all sorts of specific auto antibody tests *simultaneously*. This allows them to look all at once for the most specific lupus blood markers; for APS markers; and for the RARE instance of ANA-negative lupus. By specific auto antibodies, I mean things like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, antiphospholipid, antineuronal, etc. One of the "stickies" discusses test results.)

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This is interesting reading. I suggest you click the links and read the entire web site.

I would love to hear what you guys have to say on this subject.