So today was my long awaited appointment with Dr Karim (as recommended from the list on here). I wasn't sure what to expect and, as a result, probably hoped for too much. I took my list of symptoms, my history, my questions and the things I have been diagnosed with over the years, which to give him due credit he read through. I was disappointed to be told that joint pain and fatigue are not normally symptoms experienced by hughes patients and that if the results of the antibody tests they did today (11 vials with a trainee phlebotomist = great fun) come back negative them my APS has gone and, while they will run other tests, he wont offer any treatment for the fatigue and pain which is ruining my life.
On the positive side he said that if the tests are still positive he will send me a prescription for plaquenil so I don't have to wait until I see him again in late November. I knew I wasn't a candidate for warfarin because all my major events have been triggered (DVT by pill and miscarriages including one at 20 weeks), I have been lucky enough not to have a spontaneous clotting event so far.
I am so depressed, I now have to wait for a ten year old diagnosis to be reconfirmed (unless my antibodies have disappeared in which case I am waiting for it to be refuted) before anything can be done. Right now I just feel rotten all the time and life doesn't feel worth living. What's the point if all I have the energy to do is drag myself through work then slump in a heap on the sofa all night. Ive been patient waiting for this referral and I just want to feel better.