Okay, I'm sorry - I just have to vent. I am so irritated.

The nurse from my PCP called this morning to tell me that the pulmonary test came back saying that I was normal, that my doctor was very relieved and that probably the low oxysats were from the sleep apnea.

Okay, first of all: low oxysats in the afternoon from sleep apnea? That just doesn't make any sense.

But here is what kills me. My doctor is relieved?!? Why? What are these magical powers that the doctors I see believe in that when a test comes back negative the symptoms disappear? AAAAaaaaaaaaghhh!

Guess what? I still can't breathe, I still have positive antibodies for a disease which could kill me and which remains untreated. I'm not relieved! If the test didn't show anything than it's the wrong test (why didn't they do MEP and MIP?) or the wrong way. I just don't understand this backward logic that the test cures the disease.

I was so mad I went over to her office to get the report. I was standing there completely out of breath from walking to the office from the parking lot, using all my willpower to make myself stand when my body was screaming, "sit down you idiot!" as I was reading this report that said I don't have any breathing problems. The report also said that because the spirometry was normal there was no indication of mg. No mention whatsoever of the abnormal lung volume results except to say that the total lung volume was normal

Okay, well I guess I'll have to wait to talk to the pulmonologist when I see him - in December. Aaarrrgggh.

Btw, Alice, don't worry - between google and you I'm totally convinced that this stuff is complicated. I just wish there was more recognition of the complexity of this disease in the docs I see. Okay, I know, I need to be patient. Deep breaths. Oh whoops, can't do that.

Ally