I feel hopeful tonight after today's appointment with my GP. He seemed very open to learning about APS and was willing to not just listen to my research based suggestions regarding treatment, but implement a couple of them today. One being to increase my warfarin to get me into a therapeutic range sooner (at only 105 pounds he's been VERY cautious with my dosing but it's time to stop monkeying around) and the other being to draw blood to compare the lab results with the Coagucheck XS they normally check my INR with. He was also surprisingky open to me testing at home and said he already has one patient who does so (we'll look into this more in a couple months to see if insurance will help).
Since my appointment was limited to 20 minutes, I left him with a couple fact sheets from the hughes syndrome website along with a detailed history of my past and current conditions/symptoms. I will see him again in a couple weeks.
It was nice to feel like he actually heard me and is willing to work together to improve my quality of life. Dealing with both the clotting and neurological symptoms now instead of waiting for my rheumatologist to just tell him what to do in three months. All in all- quite a relief as I was beginning to think I needed to switch docs but did NOT want to.
I can't thanj you all enough for your support. This forum and the website have helped immensely in having the information and courage needed to push for what I feel I need. Speaking up for my kids' or even husbands' needs is much easier than doing so for myself.