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.
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
Anyone that has Bilateral Diaphramatin Paralysis
Hi My Name is Clayton Taft I live in Nunda, NY and have been dianosed with Bilateral Diaphragm Paralysis which is when Both sides of your Diaphram are Paralysis. I have had many many test done. Like a SNIFF Test and and Pheranic Nurve test. They have proved that My Right side Pheranic Nerve is Dead and my Left Side is Severally compermissed. I have been sent in Septemember to the Cleveland Clinc see Doctors out there and they feel that the Doctors here in New York are doing exactly what they should be doing. Now I have another Nurve Doctor in Hornell, NY and he thinks that there might be something more going on besides the Diaphram issues. I have a lot of shaking going on in my arms and legs. My Left arm jerks and I cant help it. I am between a rock and a hard place. This has been a rough 6 Months let me tell you. They think that I might have ALS but not sure for ALS ussaully starts up high on you and works down your Nurves they have never seen it start in your Diaphram area. So they are not sure but they cant say I dont have it for a 100%. I don't know what next to say only this week has been hell. I have had a real hard time Breathing and my Chest is much more tighter and hurts a lot more then it ever did. I don't know if it is a cold which my Family Doctor put me on some Medicine for that just to make sure. I called my Lung Doctor he wants to see me Tomorrow Morning at 10am. Dont know what or if he can tell me anything but I am very close to going to the Hospital... If there is anyone out there that has Bilateral Diaphramatic Paralization please respond to this or you can e-mail me at **** @ g m a i l. you know the rest. Thanks for reading I will try to keep checking this out... MAybe a Doctor that has delt with this more and would like to respond I would love it very much!
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