Welcome to the forum. Your story is all to familiar. I suffered for years and years before I got a doctor to thoroughly listen to me. I think that it is terrible that doctors don't want to listen and a lot of times act like there is nothing wrong with us when we know full well that there is. The sad fact is, is that a lot of doctors do not know that much about this illness and Lupus is a strange illness. Lupus can mascarade as so many different diseases. There is no cure for Lupus and it is a chronic illness, but it can in most cases be controlled by medications. I have had SLE they believe since the age of 5 years old, but I did not get diagnosed until I was 36. I guess in my case the Lupus symptoms were not severe until then. I lost most of my hair too and yes it did grow back in. My hair is not as thick as it once was, but I definitely do have hair down to my waist again. Thank heavens for that. I hope that you can get some answers and that they help you out.
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.