Re: Confusing symptoms and test results
Cardani, hello & a big welcome! Obviously I only a patient, so anything I say, please take with big grain of salt! That said---
1. Take pics of body rashes along? I would. While pics aren't diagnostic, they could help focus rheumie's thinking & help him/her lead off with more pointed questions & better-focused first round of tests.
2. What rheumie will do/ask: Definitely he/she should ask for lifelong medical history. Possibly perform a physical exam. Probably order new blood tests & urinanalysis (in U.S., rheumies often prefer to use their "own" labs, ones known to be more skilled at autoimmune tests).
3. In U.S., you may go back & forth to a rheumie episodically while rheumie & GP are still working on a Dx. If Dx'ed with lupus or similar autoimmune, in U.S., you have scheduled rheumie check-ups, the frequency determined by your severity, plus ad-hoc rheumie appointments when needed. Here you're also sent to other specialists, only if & as warranted, e.g., cardiologist, pulmonologist, nephrologist, neurologist, etc.
In your shoes, I'd also look for lupus hardcovers in your local library. British author: Dr. Graham Hughes. Amercian authors: Dr. Daniel Wallace &/or Dr. Robert Lahita.
About your body rash: I'm curious what it looks & feels like, when it occurs, etc. All but one of my recurrent rash lesions were on torso/upper arms, non-scarring, non-itching. Through deep-punch biopsy and immunofluorescent stain tests, the rash was determined to be lupus-specific.
My overall Dx was "Ro-lupus", with the only circulating autoantibody found = anti-Ro. INTERESTING YOU MENTION YOUR GRANDMOTHER HAS SJOGREN'S! I say that because *anti-Ro* autoantibodies are seen in both Sjogren's and lupus; and people who test positive for *anti-Ro* may have Sjogren's, lupus, or both.
I think you're doing a smart thing seeing a rheumie, and I hope you keep at it. And I hope you keeping posting here: lots of fine people, with good info & goodwill to share. Bye for now, with warm wishes, Vee