Have the docs given Jeanne any indication about what might be the problem? I know the John's Hopkins folks will be able to help.
It's a long and confusing story that has been going on for over 25 years, but IMO some of the recent treatment may be the problem...one hematologist is coming around to that conclusion as well, but I've thought so for quite awhile. Her particular condition is poorly understood by modern medicine, but the guy in John's Hopkins is supposed to be one of the best and most experienced on it. Luckily the hospital and the doc are covered by insurance. Thanks for asking.