• Community Member

    Member

    Go to a pulmonologist and have your respiratory function tested. I developed acute respiratory failure from MG (I also have Lambert Eaton syndrome which may be worth getting tested for – the medication for it – Firdapse – helped me quite a bit on top of Pyridostigmine, IVIG, Plasmapheresis) which then turned into chronic respiratory failure = extreme fatigue. Yeah, oxygen kinda important, it’s just I didn’t realize my respiratory function was so poor until I was in the ICU. I was on BIPAP the entire time. In and out of ICU and hospital kept having MG flares with worsening respiratory function. 6 months later a respiratory therapist while I was in the hospital suggested I get a non-invasive ventilator. Long story short my respiratory function was so poor, the pulmonologist did prescribe a non-invasive ventilator. It’s called an Astral and they described it as a BIPAP on speed. At first I needed it during the day, and now I primarily use it at night (replaced the BIPAP) with a BIPAP mask. Has improved my respiratory function (as long as I use it every night) quite a bit, and thus my energy. The saddest part about all of this is I am a physician, and I could not find anywhere I looked that testing respiratory function (and supporting it if needed) in an MG patient is standard of care even after being in acute respiratory failure.