Hi folks....its been a wile.
OK I went to Melbourne and saw Dr Tim Godfrey. He doesnt have the best bedside manner and has the driest sense of humour i have seen for a while. He ran blood test that all came back negative apart form borderline Lupus. His diagnosis based on clinical symptoms is Hughes!. He also mentioned that the blood testing laboratories here in Australia are not really set up the do in depth testing like they do in the UK specifically at St Thomas's. He concluded that with my INR never stabilising at all that warfarin was pretty much useless and he has upped my clexane to 3 needles a day of 60mg to be increased to 4 needles or even 6 once we see how I progress. He also feels that after examination that i have either damage from or a blood clot in the sub clavian artery. So i am heading for a Doppler scan. He also wants me to have a spect MRI as he feels that micro embolis are causing damage to the fine vessels in the brain. I was also given all his contact details should i need his help at any stage and he is going to have skype consults. Its not a cure...but its affirmation and better management....So I can highly recommend him for anyone here in Australia.
I am getting more symptoms now and have been put on pramipexole for the shakes I am getting.
I cannot speak more highly of this doctor. He was part of the research team with Prof Hughes and therefore understands the fickle nature of the condition.