I wasn’t diagnosed for six years after my first flare. The doctors would test for MS, because I went partially blind. Then they said I had osteoarthritis. Finally, I went to a specialist who was also a researcher. I was assigned him by luck really. He started with the diagnosis of undifferentiated Connective tissue disorder. He said I had an ANA over the diagnostic threshold but he wasn’t sure which connective tissue disorder I had. He discussed how 15 to 25% of people with lupus or RA do not show the antibodies specific to RA or lupus. Some people are diagnosed because of the symptoms they keep showing instead of by the antibodies. So I show the antibodies for sjogrens. My fibromyalgia was diagnosed because I have 18 trigger spots over all four quadrants of my body and other symptoms. My Lupus was diagnosed because during one flare my ANA was 1280 to 1 ratio and at that time the antibodies for lupus barely went over the threshold. My RA was diagnosed because after my total knee replacement surgeries, my knee joints still swell even though there is no bone and after that surgery they also found I have fibrosis where scar tissue builds really fast on my myofacial cells. Fibrosis is a really rare factor that I was told only occurs when you have both RA and lupus. Nothing diagnosed so far explained my digestive problems until the GI specialist did a exploration of my middle intestine and found Crohns. That was after telling me it was celiacs and undergoing an upper GI exploration and a colonoscopy as well as changing my diet and still having problems.

What I learned from this journey is that nothing is well known about the disorders and so most of the doctors are relying on the blood tests which don’t show in up to 25% of the people. Most of this is based on symptoms and matching symptoms to the disorder. Also that really treatment is symptom management, not cure.

My PCP "diagnosed" me 2 weeks after my symptoms. My disease onset was rapid, so they orginally thought it was lyme. My cbc was normal, my ESR (sed rate) was normal. He did some autoimmune tests and the ANA was positive with very low postive dsDNA (only 1 point over the threshold). Around that time I developed a butterfly rash. PCP put me on plaquenil and made me see rheum. Rheumy says its early lupus or a "lupus-like" disease. He is basically treating me as if i have lupus. I take plaquenil 2x a day, he told me to stay away from the sun, and he wanted me to go gluten free. Its interesting though bc he says he doesnt want to say I do or dont have lupus bc my labs dont look abnormal, however I have symptoms. When i look at my lab reqs, he isnt coding them with a diagnosis of lupus; the diagnosis code is "positive ANA." So I guess he isnt 100%, although he said he is pretty sure it is SLE and we are going to proceed with treatment as if I have SLE. I personally think I do have it (especially bc of the butterfly rash) and am very happy with plan/treatment. At my last appointment, he said my labs came back positive for IBD, which is strange bc I have no IBD symptoms and he agreed that I dont :/. I guess I will wait until something is definitive and keep treating mt body as if it is for sure SLE until I am told its not.

I went to the Dr. Told them I felt like I was walking on flash shards. They took blood and called me 3days later and sent me to a Rhuematologist. They did more blood said I had are lupus. In IND and mi. I was given plaquinil , Prednisone, nsaids, found out at 37 yrs old

I was first diagnosed with Ulcerative Colitis. Then we added Autoimmune Hepatitis, PSC, Osteo Arthritis and SLE. Just recently they found a small tumor on my kidney so now I have Kidney Cancer. This has all happened in the last 2 1/2 years. Not sure what will happen next as the doctor's call my autoimmune system "Autoimmune System Gone Wild".!!!!!

Good grief!

It took the 5th dr. From June til November. But I’m not a person who gives up. I just keep going like the pink bunny. Lol. It should not take long because there’s one blood test to confirm the diagnosis. Good luck. ❤️🥰