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Amy, yes I see a pulmonologist who has a special interest in neuromuscular diseases at university of Michigan. He is great. I qualified for a Bipap ventilator because of the respiratory weakness.
I started with the machine at night but it woke me up every night after about 4 hours. After several weeks of this, I realized I felt worse than when I started. More symptomatic and weaker. I told my doc that sleep is extremely important to help control my MG and the interruption is making the symptoms worse. So I discontinued the use at night and I only use the machine when needed during the day. He was good with that.
I did do a sleep study which showed a 6 so I do use a mouth appliance. I will say I have needed my daytime vent A LOT less since November when I began using the appliance at night.
I have read that MG and respiratory weakness won’t really show up on a sleep apnea test. This lastest sleep test I did was the same result I had before my MG started.