for the last year i've had increasing hospitalizations (with an intubation and mechanical ventilator) . I seemed to have severe muscle weakness in my chest, severe acidosis (anion gap, and lactic), low p02 until i'm either on a ventilator or rescue CPAP/BIPAP a NIF (negative inspiratory force) that drops to 29%, FEV1 that can be 101% of predicted down to 68% of predicted.
I have NO diagnosis, Bronch clean, FEV1 and NIF are normal again, WBC count was normal, no fever, EMG normal, MRI brain normal CT scan Chest normal. Bronch showed large airway inflammation but nothing else.
No one knows what's wrong!! I have a severely elevated pyruvic acid level of 400, amion acids run rampant in my urine and my bicarbonate level is consistantly low.
I'm short of breath all the time, with muscle pain in my intercostal mucles frequently.
Anyone have suggestions? i'm going for an advanced right heart cath and pulmonary stress test to rule out mitochondrial myopathy (after I fought tooth and nail to get an exam, they kept telling me this is "all in my head") But... how is obvious hypoxia, tachycardia, low NIF, low FEV1, large airway inflammation, lactic acidosis, high pyruvic acid levels all in my head? I don't think I can CAUSE that. ugh... doctors.