bilateral diaphragmatic paralysis

[kfindle]

I recently have been diagnosed with bilateral diaphragmatic paralysis.  I am a 52 year old female.  My research has found very little for me to understand what is going on.  The doctor said there is nothing they can do - I am doing my own research because surely there is something.  He said I will not need a ventilator.  I look like a normal person and seem to get around fine, but I can tell I am a little slower than others and sometimes have shortness of breath and cough up "spit wads" that seem to clog my throat.  I can walk on a flat surface for about 2 miles at a face pace.  I just don't understand it.  People think I am faking because I appear fine.  Can anyone give me some advise - the pulmonologist said in 33 years he has never seen this.  Any info will help and thanks in advance.


This discussion is related to Diaphragmatic Paralysis - Anatomy Question.

[Sunny602]

I have bilateral involvement as well...I currently live on a vent but prior to that, I was on 02 and BiPAP for a few years until my lung function totally bottomed out and I needed to be vented, that was 3 years ago.
Do you have any problems lying on your back with your breathing? I could not even do that without turning blue. Bending over also caused problems with me. How have your lung functions been? Mine slowly went downhill (my diaphragm problem were due to muscle problems that were progressive) in a restrictive pattern. At the time of my vent, I was at 14% lung function and my C02 levels were beginning to climb. My 02 sats dropped very fast, especially with exertion...as low as 68% when things got really bad (even with 02 on!) I hear you about feeling very "slow"...I considered myself to be a pulmonary cripple. I couldn't go to the bathroom without turning smurf blue.
These days, I have been able to wean myself to settings that allow me to do more of the work and I can come off for about an hour comfortably...a huge deal for me.
Enough about me...how were you diagnosed with bilateral paralysis? Did they do a sniff test, fluroscopy, phrenic nerve stimulation etc.?? With me, they did fluro and there was very poor movement, my lung functions were also horrible. My nerve is intact, just not my muscle.
If you would like to email me, please do! Sunny