Well guys, I had a phone call from my consultant - who is amazing - less than 24 hours after the scan. She says there's no evidence of active disease in the results, neither is there in my bloods, so she wanted to talk to me so I could get used to the idea that I might be in remission.
This is what the first doctor told me (though they seem to have dropped the lupus) but she has done it in such a much better way so as she says, I can have time to get used to it. I'll get an appointment to discuss all this soon.
I dont know what to think. You struggle to accept that you have a disease, then you may have to struggle to accept that its in remission. I know that remission isnt the same as cure, and it leads to new uncertainties which I'll have to manage - what if it comes back?!
It also underlines for me that the early treatment is so important because it stops the joints from being very damaged. But I am rather surprised esp since I do have tiredness a lot and some aches and pains. I'm going to talk to my tai chi teacher who is also a physiotherapist to see what rebuilding exercises he can suggest. And I might withdraw a little from this forum - just a bit - because I need to work out how I am feeling in myself - I'm a terrible hypochondriac.
Just hope that this gives you out there some hope - things can move on - I am going to have a chocolate brownie and a cup of tea now and try to take in the news.