Hi Annie

Thank you for your very informed reply. I'm feeling quite dispirited after my recent rheumatology appt where my Doc condensed a 20 min appt into a 6 line letter in which he patted himself on the back for having 'stabilised' my condition. In fact, several things are worse particularly my lung function which is markedly worse.

The more I read, the more I see that CNS lupus (I already have lupus/UCTD) can behave in similar ways to MG including ptosis, weakness, resp problems of all shapes & sizes etc so it's hard to know which way to direction to push my Doc.

I am amazed by the complacency of my resp Consultant who stated 'I am not unduly concerned by the results of your recent tests . . ' PIMax 18, PEMax 23, weak diaphragm, airways narrowed to 54% with no obvious cause . . I could go on. He attributes this to my vegetarianism . .

Thanks again Annie