My 20 year path to my diagnosis started out with horrible sun sensitivity as a teen-> frequent infections 20's, stillborn son-> Group B strep and staph sacrilyticus after 2 healthy daughter's born-> 5 miscarriages at 8 weeks-> antiphospholipid antibody syndrome dx-> antithyroid antibodies-> Hashimoto's thyroiditis dx-> frequent falling, MS ruled out, menopause ruled in-> respiratory infections every 4-5 months->positive ANA and falling in public couldn't be ignored any longer paired with scary HA and real scary hi B/P->immunologist agreed with NP-> lupus. Not everyone is so lucky, at least I knew why I had lost my babies. And, in my role as a nurse, I worked with the drs. and professionals who believed me when I said I was not depressed, and sought a reason for the so often subjective symptoms I was complaining of. ( Subjective meaning subject to the patient's perceptions, where Objective symptoms are what drs. are in the mindset to look for... i.e. increased pulse or blood pressure, edema, impaired nerve conduction tests, positive CATS or MRIs, positive or abnormal labs. Bottom line, you can have a dx. of lupus and have every test be within normal limits, once I started plaquenil and prednisone, my ana titre went way down, and routine testing on an inflammatory panel "normal". But my dr. insists on doing bloodwork every visit, and I am going with a list of new autoimmune tests I have read about to add to the list. Like... TPO-Ab, chromatin autoantibodies, thyroid peroxidase, then ask him what SREAT is, and ask about the time frame connection to stopping prednisone or other suppressives and a resurrgence of the autoantibodies used to confirm a correct diagnosis, I am being forced by illness to consider permanent disability, and I am told the SSD denies everyone the first time around, and that lupus is one of the toughest diagnoses to get approved. He suggested my APS would be what they would look at first. In med school they teach lupus is the great imitator, and in nursing school I learned that lupus is a diagnosis of ruling everything imaginable out first. And during the course of my fight to find out what was wrong with me, that since it flares, becomes noticible, then abates, periods where symptoms disappear, you get the now you've got it, now you don't dilemma. And tired of fighting being so sick.
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.