Yesterday I saw a consultant specialising in Lupus following a referral from my local rheumatologist who felt that I couldn't have Lupus.
So after 5 years of discomfort, getting an increasing amount of problems including a seizure and at the weekend a minor stroke, I have been advised that I do have SLE. While I dislike the fact that I have an unpleasant disorder I'm glad that I wasn't imagining this and it is real. I have been questioning myself, how much the symptoms are real and their intensity.
Something that became very clear from early in the appointment was that the referral originally sent was not particularly detailed as my wife and I provided a lot of further detail.
We took a list of symptoms; a chronography; printed blood test results from the period we felt the condition started to present and recent discharge letters from hospital. I would strongly recommend asking GP for a print out, our surgery were happy to do this for us when we said there was no hurry.
During the appointment I was given a steroid depo injection (which I'm not going to lie was uncomfortable!) and prescribed Hydroxychloroquine which I commenced this morning.
Still a lot of tests and stuff outstanding in relation to the seizure and stroke but this feels like a step on the right road. I'm still waiting to see how effective the medication is.