Long story short!
In my journey to diagnosis over the last 2 years I think I have been seen by every department at my hospital!
A year ago I was dx with APS but still not conclusively for SLE (although 8/11 criteria met).
So far I have seen haematology, thrombotology, ENT, maxilofacial, urology, nephrology, rheumatology and a DR at St Thomas'.
The dr at St Thomas's disagreed with the dx of APS based on incomplete and inadequate (&old) CT scan. He told me to stop warfarin and that I had no autoimmune conditions. He wrote a devastating letter to my hospital and told them he was certain there was no significant illness.
Luckily I trusted the thrombo and her reasoning, stayed on the warfarin and when I was back at the thrombo clinic (registrar) they agreed to increase my INR range, and sent me for more investigations for the SLE.
Frustratingly the letter stopped any detailed look into the cause of my +ve ANA and various other SLE symptoms and resulted in all these other drs taking the line of the St Thomas' dr, and then discharged me!
Today I saw the head thrombo again and she is very angry. She double checked the MRI and my bloods with the most senior analysts in the trust and re-confirmed APS. She is writing a letter to counteract the awful one from St Thomas'. I asked for Plaquinel to help with the SLE symptoms plus the APS ones and unfortunately she cannot prescribe this as I need it from a rheumy! She suggests I push for more appts with rheumy once her letter is out and ask them for it.
So now the question is - who is in charge of my care? I am utterly sick of chasing the dx for the other condition(s) I have. I really want a trial of Plaquinel, and the last rheumy I saw agreed a trial of it was unlikely to do any harm, but said I must ask thrombo for it!
Luckily the thrombo empathised and knows how it can make you question your sanity when being told that there is nothing wrong when there clearly is. Empathy is great. But now I need to get some help!