Hi! I was diagnosed with pSS last year at the age of 33. I have been having for a long time a bit of pain in different joints and have been feeling fatigued, but i started having new problems, among others: dizzy, nausea, difficulty finding words. They did all kind of tests (MRI of the brain and brain vessels, lumbal puncture, blood tests, lip-biopsy) and i got the diagnosis. I did have some changes in the white-matter on the MRI, but several doctors looked at the images and agreed that it was not related to Sjögren. Since then, i have had the occasional speech problems, fatigue and the feeling that my brain is sometimes in slow-motion. What is really worrying me, is that in the last 3 weeks this has been constant (very hard to do my work which is intellectual), and i have been having this dizziness (like going through an air-hole when on a plane, but even light headiness when i go) and even discrete problems when holding things in my hands. I am really worried and i am of course thinking it could be vasculitis, but i so don´t want to call the rheumatologist who the 3 times i talked to has always been telling me i worry too much. He didn´t listen to me last year when i was having pins and needles in my hands and feet adn could barely stay on my feet, telling me it was just stress, when it proved to be a serious vitamin b12 and iron deficiency, caused by atrophic gastritis related to Sjögren. So since last year i habe been substituting with b12 shots and iron and my levels when last checked in june were ok. The is also a suspicion of SLE in my case, as i have the anti-Ro antibodies, low complement and get a rash on my face whenever i am in the sun and feel really bad/tired/nausea afterwards.
Without asking for any medical advice, is anyone else experiencing something similar? Could it be vasculitis related to Sjögren? Other ideas?
All the best from Sweden,