Quote:
Originally Posted by bny806
have you tried the Cpap? DOes it seem to make you feel better? When I was having an exacerbation a few months ago and I think my night breathing was pretty bad, i was SOOO exhausted in the day time.. fell asleep the second I sat down etc... but now am totally fine again as far as that goes..
the hypoapenic events I was curious about - my dr said it was all normal.. but do "normal" people have any of those events?
My PFT's are usually in the upper 80's since I started IVIG - which is quite a bit better than they were when I got admitted into the hospital. (I had scoliosis surgery as a kid, so the couple of times they have tested PFT's before i was "sick" they were bad.. so I think upper 80's is normal for me).
Hope your getting some relief.. are they going to start you on mestinon or something?
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Still waiting for my CPA to be delivered. My pulmonologist only works in the office part of the week--she teaches at the University as well. I'm hopeful they will get the prescription, insurance authorization and deliver it tomorrow.
The tech at the sleep center said my polysonogram showed I had "severe" apnea...but my research puts 28.8 incidents per hour at moderate--the threshold of "severe" is 30. They counted the hypopnea events as well as the central apnea and obstructive apnea events. A total of over 5 events puts you in the mild apnea range. 5-15 is mild, 15-30 is moderate. 30 or more is severe, per my research. In addition, I had 14 on the sleepiness scale. Over 12 is severe on that I think.
My PFT's were normal. I have some hypoventilation from what my pulmunologist called "weak respiratory muscles." With that and the hypopnea I was wondering if it could be the MG affecting me.
I go back to the optho-neurologist in two weeks and am going to ask him about trying mestinon. I'm thinking he won't diagnose me with MG because the single fiber EMG wasn't conclusive.
Susan