I have read the Lupus UK guide to diagnosis but my experience doesn't really fit this. I was wondering what path others followed to their diagnosis and how they managed to get a confirmed diagnosis - and did it take months or years?
My rheumatologist says I have an autoimmune disease 'in the lupus/sjogrens/fibromyalgia 'family' ' but won't be more specific than that. I have a mildly positive Ana and homogenous p-anca, but my more specific antibody tests were all normal.
I asked her what the next step is in terms of nailing down a diagnosis and she got annoyed - pointed out that it's good that my blood results aren't off the charts positive. Also wants to do MRI scans to check I don't have a brain tumour (I have mild cognitive problems when flaring plus numb legs/hands). She doesn't seem bothered about narrowing down a diagnosis, although she has put me on hydroxychloroquine and advised wearing factor 50 come rain or shine - which makes me think she does believe it's lupus.
Have others had the same issue? How did you finally get a clear diagnosis? Was it not until you had positive antibody results? Thanks in advance x