Answers!

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.

Ia

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.