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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#11 | ||
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Member
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Hi Piper123,
I wonder if it would be good to check in with your pulmonologist again? If your oxygen levels are going that low routinely, that sounds like a real concern. You mentioned a CPAP machine. The doctor might want to do a sleep study overnight again. A BiPAP machine might work better for you, to support your breathing better if you are having any muscle weakness. When I had my sleep study, I felt like I was suffocating when I tried the CPAP machine, but the BiPAP/IVAPS machine is very different, and helps me keep breathing at night. It might be worth inquiring about with your doctor. You can also use it during the day if you are having difficulty breathing, which is very helpful, at least for me. I know that it's possible to use oxygen through it, too. Take care, Erin |
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"Thanks for this!" says: | AnnieB3 (09-15-2016) |
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#12 | ||
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Junior Member
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Yes I know I need to be seen again. I am glad the bipap machine helps u. I did not mention a cpap and have never had a sleep study done. My friend is a respiratory therapist and mentioned the machine ur on would probably b good for me.thank u again for your response . |
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"Thanks for this!" says: | AnnieB3 (09-15-2016) |
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#13 | ||
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Grand Magnate
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I have to wonder if your O2 readings will improve with an appropriate treatment. In the meantime, you really need the advice of a pulmonologist. A second opinion from a cardiologist (by way of an echocardiogram) would be a VERY good idea as well! How reckless of them to not determine if you have PH or not!!!!
Annie |
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#14 | ||
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Junior Member
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