Welcome to the forum. I hope we can help you find a direction and offer advice or our own stories. We know how difficult it is to lead a normal life and then to all of a sudden have that life disappear. The sense of loss, and loss of identity is hard for us. For me anyway. I'm still getting used to my new life, 9 years after my diagnosis.
Your symptoms do sound autoimmune in nature. Your ANA is a strong positive which means you do have antibodies in your blood. It fluctuates a lot. One day you'll be positive, the next negative, or the number will change. Most people with suspected Lupus will have a positive ANA in your ranges. Others will have a negative ANA. Your doctor is right, it will fluctuate. But when it's positive at your number, it makes doctors perk up and take notice. I was diagnosed at an ANA of 1:320.
The next thing you need to do is get a referal to a rheumatologist. They specialize in rheumatic diseases, which Lupus is one of. They are the only specialists who can make a Lupus diagnosis and start treatment. Your pcp can get you a referal. If you don't like the rheumatologist, don't waste time with them. Drop them like a sack of spuds and move on to another one! It's not uncommon to see more than one or two "rheumies".
Also, keep a diary of all your symptoms, even ones that don't seem to fit the puzzle (you'd be surprised). Take pictures of any rashes you get.
We know how frustrating this part is. Please ask any questions you need to okay.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Co-Moderator for the Lupus and Fibromyalgia forums