so sorry to hear about all of this!! Has anyone even done basic pulmonary function testing (FVC or anything)? I had/have similar symptoms.. even when I went to sneeze, i coudlnt' get a complete sneeze, as my diaphram wouldn't move eough to get a big sneeze.. I went to the neuro at that time and my FVC ( a test they can do in the ER too), was 72%... this is when they admitted me.. my pulse ox was still ok though..
i agree with the pulse ox purchase (i got one off amazon)... when I feel like I cant breathe it makes my mind at greater ease when I see the actual numbers- either way - if they are low, i gotta go in, if they are good - It does help me relax a bit more...

It wasn't until getting IVIG that i had an easier time..have they talked about a trial of IVIG? Are you waking up with headaches?