I'm a 37 yr old woman newly diagnosed with hughes syndrome after DVT and postive lupus anticoagulant test. I have had Mixed Connective Tissue Disease (MCTD) with primary symptoms of Relapsing Polychondritis and Lupus for more than 10 years and have had symptoms of hughes for at least a few years which went undiagnosed due to history of migraines, back problems, and MCTD. I will be seeing a hematologist on the 23rd and am looking for advice regarding important questions to ask him and discuss. My general MD is doing my anticoagulation (DVT was mid calf to above groin 10 days ago when found- still cant walk on that leg due to pain). He's set my therapeutic INR range at 2.5-3.5 which I havent hit yet but has otherwise been very vague about treatment and outlook. He saw me for about 15 minutes 3 days after dvt was found at ER. Otherwise I've only seen the nurse - basically I've had to tell him what to do via phone. My rheumatologist made APS diagnosis based in history after ER visit where dvt was found and positive LA test and told me over ohone i'll be on lifelong anticoagulation. What questions should I be asking the hematologist?
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