In Anacrusis' post about ptosis, Mike brought up the question about Dr. Howard of UNC being "one of the best" due to him saying one thing in a book and another to a patient.

I have seen Dr. Howard twice. I know him to be intelligent, experienced and very nice. And, yes, he is a highly qualified MG expert. Believe me, I put him to the test. That does not mean, however, that he isn't human. I honestly believe that he has - as many doctors do - a lot of pressure put on him to "obey" the gold standards and guidelines set up by mammoth institutions like the Mayo Clinic. Even so, I would still highly recommend him, though he may not be the right doctor for everyone!

Whether we like it or not, many doctors are under pressure from what I call the "medical mafia." That not only includes doctors and other medical professionals, but insurance companies, other corporations, lobbyists and politicians. Not unlike politicians, doctors are given "incentives" such as grants in order to tow the medical line. The UNC neurology department was given a grant from Mayo a few years ago (again). Let me be clear, however, that I do not believe that Dr. Howard can be bought!!! But this pressure they are under is very real, including the potential to lose their jobs and the reputation they have worked so hard to create.

In addition, there are committees, whose members are often from the leading clinics, who set up guidelines for how to diagnose and treat patients. Many doctors feel pressured, often by HMO's, to not deviate from those standards. Is that fair or right? No but that's a reality in medicine.

For example, a few years ago a gastroenterology committee decided that the Reticulin Antibody for Celiac Disease shouldn't have to be done. Their reasons were many, such as their bottom line and wanting a "magic bullet" test for CD. Even though many patients - me included - test positive to that antibody, they thought that the "cost-benefit ratio" for doing it was too low. So those patients who are told, "No, you don't have celiac disease" might indeed have it and be out there slowly dying from malnutrition.

A patient with celiac disease may not test positive for the Endomysial or Tissue Transglutaminase antibodies that they have decided are the only ones necessary to run. I didn't test positive for those. Not only is their logic behind the decision flawed but also it is not scientifically based. Europe still does that test and they have far more experience than the medically young U.S. does. Do you really think that a doctor would "demand" that a patient get the Reticulin antibody test under those circumstances?

That's only one example. There are so many more in the case of MG, which you guys are painfully aware of.

MG is a clinical, not psychological, diagnosis that is backed up, not backed down, with tests. I don't know why Dr. Howard made the decision he did - only he does. But I do know that a positive Modulating Antibody test, in addition to a positive clinical exam, should make a doctor highly suspect MG. There simply aren't other diseases that would present that way.

What's interesting about the Mayo test for Modulating antibodies is that they say, "it hasn't been cleared or approved by The U.S. Food & Drug Administration." Does that let them off the hook if a patient insists they have MG based on an antibody test but the SFEMG is negative? It also says that if the modulating antibody is positive, that they suggest the "MG panel C test" be run in 6 months if MG is suspected. If it's already suspected, that one test should be enough, especially for an MG expert.

Dr. Howard does say in a book he co-authored with two other MG experts that 3 - 4 % of MG patients have a AChR Modulating Antibody only. I honestly believe that percentage is higher. I've seen it quoted as high as 17%.

Doctors are not perfect. That does not, however, let them off the hook when a patient needs their help IMMEDIATELY due to a highly suspected disease state like MG that could KILL them.

Gold standards, protocols, guidelines and algorithms are TOOLS. They are not infallible and should not be seen as absolutes. How many patients who have MG, or other diseases, have been hurt due to this rigid philosophy?

So, Mike, your sister should believe in her own instincts about how she feels and the obvious evidence that IS there. Dr. Howard is indeed an MG expert and I do respect him but that doesn't mean that he wasn't wrong. Since doctors hold our lives in their hands, they absolutely should make every effort to be dead certain they're right.

And unless you're "in" the medical mafia, there's no way you can truly know what it's like to be under that pressure. The problem with that kind of system, however, is that the patients are the ones who usually end up losing. There needs to be a medical system where everyone wins.