Alice, Annie - thankyou for this wonderful idea and work. Somehow we have to rewrite the training of Neurologists so that they can understand the pulmonary issues. I have just had an appt where despite me talking of worsening breathing issues, despite me having two Lung Function Tests 3 years apart showing the decline ....despite the Sleep Study showing neuro patterns of apnoea... despite all the facts of the decline in lung function...nothing was done to help. The paperwork was ignored. No CO2 tests have ever been done. I can only assume that breathing issues were considered to be imaginary despite the b& w results of three independent tests. An appt booked for 6 months when you are complaining of respiratory distress is not appropriate!

Somewhere , somehow we have to make the Neurologists and Pulmonary Drs aware of how MG works so that they can work together and help each other and help the patient.