Hi all

I learnt last week that the NHS had lost my bloods and so the auto-antibody tests were never even done. This discovery came four months after the bloods were taken and one year after I was referred. I'm not due to go back to the rheumatologist until June, at which point he will reorder the tests and I will have to wait another 4-6 months to discuss the results and work towards a diagnosis and treatment.

So I gave up on that.. While they flail around being ineffective, I can't live my life. On Friday afternoon I booked to see a private rheumatologist at a clinic in London on Monday evening. In half an hour, he had diagnosed me, given me a systematic steroid injection, and prescribed me daily hydroxychloroquine (plaquenil)! Apparently, I have lupus.

I still think I have too many elements of DM to ignore (knuckle rash and proximal muscle pain and weakness in particular), but I'll broach that topic next time I see him.

So relieved to be on a new path where I get help, have answers and can have hope that I don't have to keep living as I have been, and especially that I can stop obsessively Googling my symptoms. Two weeks ago my GP told me I needed to accept that if no doctor in nine years could tell me what was wrong, there probably wasn't anything wrong. I went back on Tuesday and shoved my diagnosis right in his face. SO satisfying.

Hope you're all doing well.


la, please join our lupus community, in that case. There is a link to it in the right hand column. I am glad you found a rheumatologist who could give you a definitive diagnosis.