Many of us have been in the sad position of knowing more about MG than our doctors, or not having our symptoms taken seriously, or being in a situation where we feel inadequately medicated. However much we may understand the difficulty of diagnosis and treatment, that is an unacceptable place to be. At the risk of being considered to be "doctor shopping" we need to get a new physician that we can work with. (Doctors whose specialization is MG understand that their patients may have seen many doctors without diagnosis and proper treatment, especially true for those of us who are "seronegative.")

There is good reason for many of our drugs to be "by prescription only," however frustrating that may be for us at times. Even too much Mestinon can be life threatening, other drugs we take are even more dangerous with life threatening side effects that are more insidious; and all require careful monitoring. Casual prescribing of dangerous drugs like prednisone is no more acceptable than starting IVIG and leaving the patient to determine rate and concomitant medication. In both cases, the patient has valuable input, but experience (and responsibility) is in the hands of the medical team.

When despite our best efforts, we find ourselves in positions with a medical team that has little experience with MG, we can turn to our literature and others' experience here for resources to teach while we look for a center where there is experience. Poor care and unwillingness to learn is unacceptable and reportable.

But where do we report our own blunders when we take care decisions on ourselves? To our doctor? The medical board will have little interest, the doctor may not want to care for someone who is uncooperative and less than honest. Do we really want be our own physician (a fool for a doctor and a fool for a patient, as we were cautioned in medical school)?

After only too many incompetent-to-treat-me neurologists, I run all questions and prospective changes in medication and life style by my neuromuscular specialist. Sometimes I know the answers (at least as far as I have kept up with the literature, etc.), but we are a team. I don't want another incompetent physician on my team, especially me. I have an important role in deciding on diet, drugs, activities, and reporting changes either good or bad and I can switch teams if need be, but I am not my own physician, however good a one I think I might be :-) b.