I know this is going to sound dumb, but . . . I live in a low population state. I was one of the first APS patients to be diagnosed in this state (actually I was diagnosed in another state.) I now have gait issues and back problems which have, at long last and thanks to this site, are theorized to be related to an INR below 2.5. My hematologist has now concurred my INR should be 2.5- 3.5 and I am taking a tad more warfarin to hit this level. But I still have days . . .
Some days I can control my gait fairly well. My pelvis remains neutral, when I look at myself in random mirrors and glass store fronts I note I am erect and not pitched foward. I can feel most of my walking work is originating with the gluteus maximus muscles. My back does not hurt and I have no sciatic pain.
Other days all the above is reversed. AND I SEEM TO HAVE NOT MUCH CONSCIOUS CONTROL OVER ANY OF THIS!
I read with great interest the intersection of MS symptoms with APLS. I have no eye problems (other then near sighted with baby cataracts; my IG factors are fairly stable and good, and my neuro is not alarmed by a spinal or lumbar MRI) but I note a clear correspondence between gait control/pain and INR #s.
But my local docs don't seem to know much about this so I'm not getting much advice from them. Is the presumed damage to my spine from a low INR more injurious to my long term health then the risks associated with a high INR number? I have been going as low as possible (encouraged by my heme and my ex-rheumy) but the more I look around the more and more people I see with a pitched forward gait who are transitioning into walkers and wheelchairs. I don't want to be one of those.
Does anybody have any advice? Is it time for me to look for an out-of-state rheumy who will have a better -- or at least SOME -- perspective on this question?