For many people with lupus, the diagnosis comes as a relief, because there are so many varied symptoms, and we begin to feel like we might perhaps be imagining it. I had lupus symptoms on and off for years - but no-one ever realised they were linked.
So how is lupus diagnosed?
The following information is summarised from: Dibner, Robyn and Colman, Carol. Lupus Handbook for Women. New York: Fireside, 1994. Pages 29 to 33.
There are 11 abnormalities commonly associated with lupus. Having any four of them is sufficient for a diagnosis of lupus. Very few patients develop all 11 abnormalities.
The 11 key points are:
1. Malar Rash - a butterfly shaped rash over the nose and cheeks.
2.Discoid Rash - a rash that looks like psoriasis, and appears after exposure to sunlight.
3. Photosensitivity - sensitivity to both UVA and UVB radiation - even fluorescent lights can affect lupus patients. (We wear sunblock 24/7)
4. Oral ulcers - can be painless, and the patient may even be unaware of them.
5. Arthritis - usually affects small joints (eg in the hands) but can also affect larger joints, and ligaments. It does not damage bone. It can be transitory or chronic.
6. Serositis - inflammation of linings of lungs, heart or abdominal cavity. (For those of us with abdominal inflammation, a diet free of gluten and lactose can help with reflux and irritable bowel symptoms.)
7. Renal disorder - kidneys with some damage, from mild (eg leaking protein into urine) to severe (losing ability to remove waste from the body). This can be associated with high blood pressure.
8. Neurologic Abnormalities - from simple "brain fog" (forgetting things, having trouble concentrating) to psychosis or seizures.
9. Haematological Abnormalities - hemolytic anemia (body makes antibodies to own red blood cells); thrombocytopenia (low number of platelets, can result in excessive bleeding); leukopenia (low white blood cell count); lymphocytopenia (lymphocyte count is low).
10. Immunologic Abnormalities - Anti-DNA antibodies (exactly what it sounds like, body makes antibodies against its own DNA); lupus erethematosus cell preparation (LE cell is in blood of 90% of lupus patients, but also in patients with other autoimmune disorders); Antibodies to Sm (antibodies to a protein found in the cell nucleus); false-positive sereologic test for syphilis (some lupus patients produce antibodies similar to those produced by patients trying to fight off syphilis.)
11. Antinuclear Antibodies (ANA) - about 95% of lupus patients are positive for ANA (antibodies to cell nuclei), but a positive ANA can also be associated with other autoimmune diseases.