Lupus is certainly NOT diagnosed by whether or not you "look sickly". In fact, with Lupus you can be very, very sick and not look it at all.
Your PCP should have referred you to the rheumatologist the first time your ANA came back that high instead of waiting around!
You are certainly not crazy, although sometimes our symptoms make us think that is the case. For many of us a diagnosis is a relief in that we finally know we aren't making it up and "being weak".
Lupus is diagnosed by symptoms, unfortunately there is no single test that gives us definite answers. Drs will make a diagnosis if we have at least 4 of the the following 11 symptoms:
1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.
When is your rheumy appointment? Check out the thread Lupus 101 and read the info about
how to prepare for your first appointment. Definitely make a list of all the things going on with you that didn't used to be the case -- we never know when something we are prone to dismiss is actually the magic clue that leads the Dr to a diagnosis -- take the Dr the list and go over it with him/her!
Let us know how it goes or if we can help you with anything in the mean time.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde