Well I ended up with flu and nearly no voice in time for going down to London to see Prof Hughes. With train delays etc we spent about 7 hours in all travelling. Starting at 9 am and back at 11.45pm. Boy was I tired and completely useless the next day.
As we all know he is a lovely doc. Very thorough. We discussed my tests of 2004 at St Thomas. I was under the impression I tested negative and have never been retested since. BUT drum roll, I was misinformed by a junior, I am positive Anti ro. Yeah.
It feels so odd knowing I actual do have something wrong. Before I felt like a fraud and kept telling myself perhaps you are imagining all this. Now when things hurt I think, no it really is real. After all this time I am vindicated.
So we are going to try plaquenil again. I tried it in 2007 and I felt it depressed me and gave e nightmares he does not want that so thinks just 2 pills per week may be OK. I need to ring him in 3 months to say how it is going and going back in 6 months.
My next hurdle s getting the new GP to agree to it. My son has been trying since he saw the prof 6 weeks ago to get it but the GP is putting obstacles in his way and we share the same GP practice.
Just seen Professor Cruz with a result I think ?
How do you get proper treatment when the dr you see at Lupus Unit St T says he will see me in one year!
Good or bad app ??? 🤔
Referrals!
