JJ, Well, this is just stupid.

You can't assess breathing issues by looking and listening to someone. Do they still believe in scientific proof in your country?! You need thorough breathing tests, and possibly an echocardiogram (in case it might be pulmonary hypertension).

Does the Dutch system respond to legal threats? Patient representatives? At least the UK's NHS has some sort of complaint system.

And I will say again that swelling of the feet has nothing to do with MG. Did you bring that up? If you have a heart, breathing, or circulatory issue, that might cause feet to swell. So could gout.

I do NOT understand this at all. Where the fluff is the good medical care in Europe?

You shouldn't despair simply because these doctors won't do a damn thing. There must be someone who can help you figure all of this out.

In the meantime, if you haven't already, write everything down—compartmentalized or not—and put it into categories that make sense. As if you should have to do that in order to get help! Lazy doctors.


Annie