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Old 01-04-2010, 10:52 AM   #1
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Breathing Issues with LGMD

Hi everyone --

I was just wondering if any of you suffering from LGMD have had any breathing issues.

I started noticing breathing problems when I laid down at night. It got to the point where I had to prop myself up to sleep, but also found that I was having occasional issues during the day.

I finally told my neurologist, who promptly referred me for pulmonary testing. The testing in her office showed only slightly below normal readings, but she felt I probably had some sleep apnea going on and recommended overnight sleep studies. The first study showed moderate sleep apnea with severe oxygen desaturation (75%) during the night. I did a second study using a CPAP machine, which seemed to solve the problem during that night.

I started CPAP therapy in mid November and have been extremely compliant using the machines. In all honesty, I LIKE the machine because I feel I can breathe better when I lay down to sleep.

My DME provider has been very diligent about doing overnight pulse ox testing to make sure we're getting the desired results.

Right before Christmas, my DME provider notified me that I was being switched to a BIPAP machine because the testing showed I was actually getting worse on the CPAP with increased pressure settings.

I was just wondering if anyone else has been through all of this. I always knew that breathing issues COULD become a part of this, but always hoped it wouldn't.

 
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Old 01-08-2010, 02:49 PM   #2
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Re: Breathing Issues with LGMD

Hi Kathy,

I have mild sleep apnea if I fall asleep on my back. Often I start dreaming that I can't breath then wake up startled and gasping for breath. Nothing as severe as you are describing though. I'm sorry you are having these frightening symptoms requiring the equipment. I'm glad the equipment helps you a bit.

I can only sleep on my side now and for some reason only my left side for long periods. I don't sleep well or long on my right side. I used to LOVE sleeping on my stomach but I feel like a beached whale if I try that now because I can't move, can't breath, and it's very uncomfortable.

I hope your symptoms don't worsen and that you are rewarded with some restful, comfortable sleep.

Mark

 
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