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Ozzy

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Joined
Oct 18, 2006
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PALS
Country
US
State
New York
City
Glens Falls
Hi ... I am new at the site ... I was diagnosed with Multifocal CIDP w/ Neuromytonia overlap (I am in my 4th year) - which both are supposed to be autoimmune. Over the last year I have gone to two canes and severe breathing overnight problems and dysphagia progression. The breathing is especially compromised and I am on O2 and CPAP at night (lungs feel like they are hardly moving at times). I have been on all sorts of autoimmune suppression drugs ... but this disease is progressing rapidly. In the AM I feel punch drunk, slurring and hardly able to move and breathing muscles very sore ... could this be turning into an MND-like disorder perhaps - my Neuro, GP and Lung Doc are all out of answers. Anything on info would be a great help - thanks very much!
 
Hi Ozzy. That's a complicated diagnosis you have there. I'd be asking your lung doc if a Bipap wouldn't be better for you. The site I looked up your diagnosed on said that diaphram weakness could be a problem and that would require Bipap not CPAP. I'm no doctor but sometimes these docs look at the big picture and miss the little things. It's worth mentioning. I got this information from the Neurology division of George Washington University in St. Louis, Missouri. They have a good website but it's pretty technical. As for it turning into a MND the site didn't mention that. Welcome to our site anyway. AL.
 
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Thanks for BiPaP Info

Al ... thank you for your suggestion ... I had heard the same about the CPAP vs. BiPaP and I will be asking about a switch ... it's these insurance companies that are the biggest problem. Right now I am set at 8 LBS for air pressure - it does not overwhelm my lungs, but the diphragm does suffer along with the intercoastals every AM - which eventually wakes me up.
 
Are you in the US? In Canada we use cm of water as a measurement for Bipap. Mine is set for 18 for Inspiration and 8 for Exhalation and 18 Respirations per minute. Some may think that sounds high but it's what I need. They raised my EPAP from 6 to 8 this summer. AL.
 
For Al on CPAP or BiPaP

Al ... In this US (old English Sytem Still) as far as lbs. go so I am not sure what would be better going up or down with CPAP or BiPaP - thanks Ozzy
 
I'm not sure how the pounds would convert to metric for the Bipap. Anybody else able to jump in and tell us what an average setting is?
 
Not sure how much help this will be. I am suppose to be on bipap but machine says vpap. Its set at 15/10. I have 2 liters of oxygen with it at night.

PaulaB
 
Hi Paula. From what I understand Vpap and Bipap are the same thing just different names for different manufacturers. AL.
 
Wow Al thanks for clearing that up for me,,there all this time i thought they gave me the wrong machine. Anyways i am finally getting use to that machine now.
Thanks again
Paula
 
I checked and Respironics calls theirs Bipap and Resmed Sullivan calls theirs Vpap. There are a couple of other companies that call theirs by different names as well.
 
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