Wishing you the best of luck Erinbear xxxx. I hope you never give up that hope!
(In my humble opinion, the pulmonologist´s report and your response to Mestinon should have been enough to get me looking for a new neuro - and especially so if present neuro wishes to withdraw a medication that is already working because he thinks you might have something else!!!)

Juliejayne – ´Rare is not impossible´ caught my full attention as well

If you are a doctor, like the one in the conference presentation who has been through repetitive diagnostic tumble dryers and travelled many impassable roads, similar to many MG patients themselves, who then continued to research high and low and present her findings at one of the first neuropulmonary conferences in the world, then I would think that holds an enormous amount of hope & promise for ordinary MG patients in the not too distant future. Who knows one might even argue it is lucky that she did have a rare form of MG, as that might just kickstart the vibration of the ear drums of selectively deaf neuros who so far have been having trouble believing in any form of MG existing at all....


Anacrusis