A comment from Karajo, Community Leader of the Medhelp Lupus Forum, who was finally diagnosed with Lupus:
"I just spent about 10-15 min in the sun prior to going inside the doc office. The lab was probably drawn about an hour later. It made my ANA go from neg to 1:2,560."
1:2560 is a very high positive titer! Good tip if you are ANA negative and suspect lupus/meet the lupus criteria.
Something else that comes to mind is Antiphospholipid Syndrome (APS) also called Hughes Syndrome or sticky blood syndrome. Antiphospholipid antibodies are detected in over half of the patients with systemic lupus erythematosus. Interesting to note, since you were first given this diagnosis, antiphospholipid antibodies are also associated with transverse myelitits.
Excerpts from the symptoms page on the Hughes Syndrome Foundation (each symptom goes into more detail in the article):
“It is not necessary to have ALL symptoms to be diagnosed with
Hughes Syndrome (antiphospholipid syndrome - APS)”
Hughes Syndrome (APS) is sometimes called 'sticky blood syndrome'. This is because people with it have an increased tendency to form clots in blood vessels (also known as thromboses). Any blood vessel can be affected including the veins and the arteries.
The main symptoms of Hughes Syndrome can include any of the following:
Headache or migraine
Thrombosis - DVTs
Multiple Sclerosis-like features
"Multiple sclerosis-like features
Some people with Hughes Syndrome develop a syndrome which is very similar to multiple sclerosis where they have numbness or pins and needles, double vision or loss of part of the field of vision, and have difficulty walking. Consequently, one of the main alternative diagnoses in patients with Hughes syndrome is multiple sclerosis, and the clinical team here are continually treating patients who had been previously misdiagnosed with “multiple sclerosis”."