Question CIDP or MND

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Ozzy

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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!
 

Al

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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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Ozzy

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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.
 

Al

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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.
 

Ozzy

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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
 

Al

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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?
 

paula B

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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
 

Al

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Hi Paula. From what I understand Vpap and Bipap are the same thing just different names for different manufacturers. AL.
 

paula B

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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
 

Al

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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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