I just want to say that you have done such a brave thing by coming here and letting us know how desperate you are. Thanks goodness that you survived, and will live to come through the diagnosis and all of the treatments that will make you feel so much better.
I have spoken about things that happened t me in my younger life with SLE before, but just to refresh a little bit. I have had SLE for over 30 years. I was diagnosed when I was 16 and at that time I had no movement in my body because I also had full body juvenile arthritis. I couldn't bathe myself, I couldn't turn over in bed, I couldn't walk, I couldn't do so many things. I worked so very hard with doctors, nurses, therapists and most of all my wonderful parents who helped me through all that I had to go through.
I was hospitalised for the first time for 8 months and I was encased in plaster of paris for 4 months and cried and fought against wearing this cast when I was expected to do exercises wearing it. I did it though. All of the things I had to do were in the main very hard and one problem lead to another with various treatments, but I stuck it out and fought and fought to get through it.
Since then, I have developed very serious medical problems that have led to my becoming very disabled and when I remember how hard I had to fight when I was younger just to have something to keep me going - my life - then I know that all of the pain and hard work were so worth it. I do battle every day to get through each day. I have lots more problems now then I did when I was 16, but I will not give up.
The point of all of this Zorm is to let you know that, yes I know what is happening to you is so frightening, frustrating, so painful and more so hurtful to your mind. The thing is though, with the right help and love and care from everyone, whether it from all of the people here or the people who you have contact with physically every day, your family and friends in your life you will honestly come through this. From the way I read what you write, you will not give up either. Once you have a diagnosis, then the treatment regime can be worked out and you will feel so much better once that is sorted.
I have had, especially when I was younger, times when I was so much in despair and wondering why this had happened to me at such a young age, but as time went on I worked hard and went on to work, have a good career, travel, marry and all of the thing that most people I know have. The one thing I do now that gives me most satisfaction is that I give emotional support to others who have the same medical conditions as I do. I can't physically do a lot, but I can do this for others and this makes things worthwhile for me.
I hope that by telling you a little of myself, that you will be able to see that you can overcome obstacles and come out the other side. I know you will eventually get sorted out, and if the tests and the consultation with Graham Hughes - lovely man by the way - work out well for you, then you can start on the road to being in control of your life again.