Originally Posted by en bloc

I may not even get to try the medication, Mary. It appears this doctor wants to write a paper for a trial and wants me to stop ALL my cardiac medications and repeat ALL autonomic testing...even indicated my pacemaker may skew results, so may want that turned off too.

After 17 years of testing and retesting (mostly because docs like their OWN tests), I'm done testing. I struggle too much to travel 3 hours each way for another long battery of tests in multiple trips. The Mayo Clinic determined I have dysautonomia/autonomic neuropathy 16 years ago and I have had numerous doctors confirm this in Dallas and here in VA. Actually, this guy doesn't question my diagnosis, he just wants all new tests for HIS paper...he let it slip when I questioned the reason for retesting that he "can't write a paper without proper documentation using HIS controls". I don't know how some of these docs get through the door with the size of their egos...LOL

So much for patient care being a top priority. Actually, I would gladly participate in documenting a trial of this drug...IF he used my previous testing. I have done many research programs at JH for Sjogren's, so willing to help future patients for this as well...but not at a risk to myself. I can't go a few hours without my BP med...much less the week he requires. My cardiologist will likely not approve this action anyway.

I became real 'interesting' to him when my BP dropped during his exam (33 systolic points upon standing)...EVEN though I had taken my medication. Clear signs that my current regiment is ineffective. That's when he started with the retesting...off meds. Prior to that he was fine with my records of previous testing.

I'm just trying to gather as much info about this medication as I can (in use for this condition). Apparently, not many people have used it.