I just joined this forum after a recent rheumatology appointment at a major university hospital in Washington, DC, where I met with a great rheumatologist after seeing other doctors with no success. He gave my diagnosis on a scale, saying that his speciality describes lupus using a spectrum kind of thing.. he said on a scale it starts with "Not lupus" or UCTD, then goes to "Possible Lupus", then up to "Probable Lupus" and finally to "Definite lupus" (which he said is the level that tends to have major organ involvement and damage), and he told me on that scale that I am "Probable Lupus". He put me on Plaquenil and wants me to follow up every 3-6 months for blood and urine tests.
My symptoms have been persistent mouth ulcers on the roof of my mouth, inside my cheeks, etc., terrible fatigue to the point I struggle to get out of bed most days, daily joint pain and random sharp pains everywhere especially knees which turn red, tingling in hands and feet, swollen and painful lymph nodes, Raynaud's in fingers and toes, and a redness across my cheeks and nose that comes when I'm exposed outdoors (I attached a picture because I'm not sure if it's a butterfly rash or not). I just generally feel like I have flu aches all the time too.
My ANA is 1:1280 but all other specific antibody tests were negative except a borderline anti cardiolipin for IgM. Therefore I am confused, am I still a lupus patient despite the other tests being negative? I am on medication now and my doctor told me "Probable SLE" and he will be monitoring me frequently like I mentioned. It's not "Definite SLE" because of no kidney or organ involvement (so far) so is this still a diagnosis of lupus because I'm only one step away from that? Or should I consider myself still undiagnosed? Sorry for the lengthiness and thanks for any help in advance <3