I really love that "I have never seen it".

one of the leading experts I have seen ( a very nice compassionate physician with truly excellent bed-side manners) told me that he has seen more then 800 MG patients and has never seen someone like me. so, he is therefore confident I do not have MG.

His explanation was that- My respirator relieves my respiratory symptoms because it is psychologically making me feel better. (obviously this guy has never put a mask on his face). My effort dependent respiratory tests show numbers consistent with respiratory failure (as my local pulmonologist wrote) because I am not putting enough effort in doing them, and it can be very misleading for pulmonologists who do not have expertise in neuromuscular disease (which my pulmonologist doesn't officially have) . It all fit so nicely for him that I really wanted to believe it, and even did for a day or so!

Just to be more confident in what he said, (as my pulmonologist who I regard as an excellent clinician thought very differently, and I found this conflicting information a bit confusing), I asked him if he could refer me to a pulmonologist that does have expertise in neuromuscular diseases.

After getting the results of her tests, and clinical impression, he told me with the same level of confidence that he has no doubt I have MG, with significant involvement of my respiratory muscles and I require treatment as soon as possible. He told me that because of my very unusual course, and normal results of tests he nearly missed this diagnosis, despite his vast knowledge and experience.

To me this just added to my confidence in him, as it showed that he was both open-minded and ready to think out of the box and also admit his mistakes.

When my response to the treatment he gave me was not what he expected (and in fact quite the opposite) he convinced me and himself and that I was in fact in remission, but not "aware of it". and wrongly thought I was doing much worse. ( I later found out that he had results of tests that showed it, but chose to ignore them and put a big ?!, even though they fully supported what I felt and said). He explained to me that as I well know from my own clinic patients and their families have no real insight into their illness (which I didn't know and in fact had many examples for the exact opposite).

He again told me that he is never seen someone like me, and therefore what I am experiencing is "impossible" and due to emotional problems. (by that time I was so desperate from I have gone through, that I can't say I didn't have a pretty severe emotional response to all this, which was ultimate proof for him and his team that this is the reason for what I wrongly thought was a deterioration in my condition).

It took me a few months to get back to my senses and understand that I have to stop taking this treatment ASAP. It took nearly a year until I could finally do that.

Recently another leading expert told me that the adverse response I had to treatment was "impossible" as he has a lot of experience and has never seen something like that. This sentence to me was the best possible warning sign to politely thank him and find someone else ASAP.

I have learned my lesson. physicians that think that what they have not seen can't exist, will not change their way of thinking just because they are proved wrong once. It's not even worth the effort to try and convince them. They will also have no doubt that even though they have never seen a patient like you, they understand your illness and what you are experiencing much better then you do.

when you have a rare illness, that doesn't obey the "rules" you have no choice but to find those physicians that truly understand that even if they are highly experienced what they have not seen can exist, and in fact does.