I think I have Hughes Syndrome??!

Well, with my load of facts, website information print offs and a book on the subject that I had ordered online from Amazon.co.uk - Sticky Blood by Kay Thackray, I headed for my GP to get this problem sorted. I was sure that I had Hughes, APS, Sticky Blood, whatever you wanted to call it, I was sure that it was what I had and I wanted treating!! I had diagnosed myself, I knew what I wanted and it was with a brazen tone, that I told my GP that I had sorted out what was wrong with me!! I gave him all the literature, told him what blood tests I needed, what medication I could try and then I would know what was wrong, I would have my label of diagnosis and all would be well with the world.....(not so!)

My GP had never heard of the condition and looked it up on Wikipedia as I sat there!!! I was gobsmacked!! Why didn't he know what it was?? Hadn't he treated anyone with it before??? He didn't have a clue....he said that by going down the symptoms...he could tell that there were some matches with how I had explained how I felt and he was prepared to test my blood for the antibodies. The tests are very inexpensive apparently and he again looked up what blood tests he needed to order for me. He was fine about me diagnosing myself!!! Many GPs, I have heard, have not been so nice about being told how to do their job!! He was open to considering any option as we had had many conversations about my frustrations of not knowing what was wrong with me. He is a fab GP who did a lot of work in pain management at one of the Teaching Hospitals in Sheffield. He had explained that there were many people with unexplained pain symptoms and that although it was difficult to cope with not having a label for my problems, that he was more than happy to treat my symptoms and he believed them to be real, even if at times I thought that I was going mad!!

I had my blood tests and I told him that I was going to see one of the Specialists down at the London Bridge Hospital privately to discuss my diagnosis and treatment. He again was fine with this, at that time I was still waiting to see the neurologists in Sheffield, so no further referrals were due from him on the NHS until we knew what those guys thought.

I asked him if I could have a copy of my blood results when they were ready in a week or so and take them with me down to London, he was fine with this too. I had my tests done by the practice nurse that evening and I was ready to go down to London 9 days after that.

The day before my visit to London Bridge, I called in to the GP office and got the results of my tests for Hughes Syndrome which had been prepared for me in a sealed envelope to give to the specialist I was seeing in London the following day. I opened them up ....there were a few anomaly's with my bloods for general screening... but for having Hughes Syndrome - negative! Negative??? It can't be, I do have Hughes Syndrome...I know it???!!!

I was so upset about getting these negative results, but I went to the specialist down in London the next day. I was sure that their laboratory would test my blood and it would show that I had Hughes Syndrome, they would see that I definitely have it.....wouldn't they??