"He's the kind of neurologist who wouldn't dare go against the "status quo" openly but would talk straight to a patient."


that's a shame. because it seems to me that unfortunatley most of the more open-minded, humble neurologists are intimidated by the more arrogant ones. I have to admit that I have not seen it to that extent in any field of medicine. although, medicine does tend to be hirerchacal and there are those who are considered leading experts in every field.


"I imagine that when someone says "I'm right" for decades, it might make that person - and their colleagues - look unprofessional or unethical if they said now that they were "wrong."

this in fact is not true in science or medicine. many approaches that were considered "state of the art" 20 years ago, are now abandoned. the advances in medicine are dependent on constant constructive criticism, questioing of what you have known, in view of new evidence, some degree of skepticism (obviously you can't make major changes in your managment approach based on anecdotal evidence).

this is true for the specific patient as it is for the entire field.
I have used this quotation from the "hunting of the Snark" when as a resident I presented a patient in which we all went wrong (including me), during morning conference. I talked about the dangers of being given false reassurance about your (in this case completely wrong) diagnosis by the fact that all the rest of the team thinks like you. I said that there was a hidden clue that we all missed, because we didn't have to think too much about the diagnosis as we already "knew" what it was.

As physicians we have to be ready to admit our mistakes (as hard as it is) and be ready to learn from them and from the mistakes or others as well.
I think that this was one of the best parts of my training that we had those conferences, where we discussed medical errors, without pointing fingers, but in order to learn as much as we can from them.


"What makes me literally crazy about all this is that so many patients are suffering. Patients who so obviously have fatigable muscle weakness. "


I fully agree with that, and feel the same way. and that is why I am trying to do everything within my ability to change that.
the amazing fact is that the neurologists know it as well, but just see it as some "natural disaster" they have no control over, and can do nothing about. instead of understanding that some of it, at least, is due to their own missconceptions. (at least this is the conclussion I have reached after almost a year of learning as much as I can about this illness, and the way it is managed-from the patients, the medical literature and the neurologists, and I know that many physicians and patients will not be ready to accept what I say).

I know that at least in my case they have made serious managment errors, based on such missconceptions. and I am quite sure that I am not the only one. although I am really not sure what the true extent of the problem is. and how many more patients are missmanaged, but sort of accept it, and think that it is OK.

according to the leading neurolomuscular experts, it is very rare for a patient with MG, to be missmanaged in that way, once they have reached a good MG center, and had all the proper tests, but I am really not sure how true this is.
my own experience is very different.

alice