The pain in my neck has lessened - I still think the right side is swollen very slightly - but at least the pain seems to be lessoning.
I'm still having my spells - but they are down to only a couple of spells a day. Alex has been sleeping a "little" better - i.e., two nights earlier this week I got 7 hours of sleep. The first bad night after that was followed by the worst day for spells. But it's gotten better again since then, so it could truly be just a wierd migraine perhaps partly blamable on lack of sleep.
I haven't talked to my doctor this week. I've been planning almost every day to call him, but I'm just so sick to death of being poked and prodded at just to be told, we don't see anything. The thought of going through more tests was more than I could stand this week - so I put it off.
I'm not sure I made it clear when I was out last weekend, but the pains in my legs aren't as bad right now - just a few twinges here and there; some achiness sometimes when I'm sitting - makes me want to put my feet up is about all. So that's all good news.
From what I've found on the internet, it seems like big clots are easier to find - people who traditionally get clots (the elderly, the infirm, etc) tend to get them in the larger veins of the legs - so using traditional methods works great to find those kinds of clots. Even the message board I check often that covers a different clotting disorder - they too typically get leg clots - large ones in the large veins - give off pretty typical symptoms and are easy to find. So, I'm kind of wondering if it's because of lack of experience with Protein C Deficiency here in Central Iowa that's making mine so difficult to diagnose. If I am getting clots - I can get them anywhere - either in veins or arteries... hence, possibly my having gotten the PE's last fall without having a leg clot first. So, not to scare you - but to 'vent' and reassure you (I hope)... I do think I have been clotting - I do think the aspirin is helping on the artery side of things - and I do think things are starting to get better. I just have to hang on a few more weeks to see the hemotologist - and I'm going to ask him a lot of the questions he'll be more likely to know the answers to than my regular doctor - and I'm going to find out the best place for me to get my testing done in the future if things turn around again for the worst. He may or may not put me back on coumadin - but if he believes I've had clots (who knows - nobody else seems to believe me) - then I'll be on it for sure. Which I know is risky in and of itself - but at least it reduces the likelihood of clots - which has to be somewhat of a reassurrance in and of itself.