I'll make the background information short: I am a 30-something woman who started having leg pains in 2011. I was given NSAIDS and blown off by the doctor, until I had a mini stroke later that year. Even then, I was treated horribly by arrogant neurologists (my least favorite type of doctor) who insisted I was having psychotic episodes. Eventually one of them told me to see a rheumatologist who tested me properly for Hughes (2 positive tests 14 weeks apart gave me my diagnosis) The neurologists kept saying I was negative because they were only testing the beta 2 glycoprotein instead of the LA and full anticardiolipin panel. I can only imagine what would have happened to me had I continued to remain untreated.
I am currently taking Plaquenil and aspirin, along with a calcium channel blocker for my secondary Raynaud's and an epilepsy pill for my nerve pains. My rheumatologist prescribes a round of steroids whenever I'm feeling particularly bad, and I'm wondering if I need a hematologist instead?
The Plaquenil is helping, but I still have memory lapses, joint pain, and sometimes leg pain. I have been reading about everyone getting their INR results, and that was never suggested to me. I have also begun to get bad headaches often. Can all these issues be related to the Hughes? How do I know if my condition is being properly controlled? I have only been diagnosed since September, so I'm still in the learning process.