I had a physical Jan 2014 in which everything seemeed ‘normal’ except for the breathing problem. Blood work was ‘perfect’. Over the years I have learned to work with the physical limits I have. I often wonder if the people that die from heart attacks are really sometimes caught with this breathing problem but were unable to get air before passing out and dying. I mentioned this to doctors who tell me that I don’t know what I am talking about. The interesting thing is when I first came to the hospital years ago- all the medical energy was spent taking care of my heart since it was racing, blood pressure was up, headache, etc. Just a note --Chronic Inflammatory Demyelinating Polyneuropathy had also been mentioned at the start of the problem. Doing -OK

I had an exam last week and found out that I am about the same as I was last year as far as the different mechanical test are concerned. I am now used to the condition and have made life style changes. My love of water activities has been curtailed to a large extent even thought I still get wet but watch out depth and the area. When I was working thru disability rulings I thought an old injury that hit my diaphgram area back in 1997 was the primary cause. All the doctors said there was too much time between that accident and my problem. That accident had caused a trip to emergency and was documented with Workers Compensation. Sleep apnea developed after the accident. This developed after the sleep apnea. Oh, by the way I don't smoke and enjoyed an active life with sports,swimming, hiking, worked in construction,etc. I think the doctors could not explain the cause and therefore would not entertain any possibilities

So your diaphragm never came back? There is some hope that it will/may - At least the L side, or more likely the L - I received IVIG when diagnosed on that side - with the R didn't really know what was going on - thought it was due to this brace I was wearing post hamstring repaing and extremely rapid deconditioning (wrong on both counts!) The headaches I had but only at first - though my pulmonolgist did get me a bipap machine thinking I was underventilating so much I was retaining CO2. But I think my body is adjusting - I can sleep lying down, flat even! - and am finding I can go a bit further in Yoga, riding bikes.....I have no underlying pulm disease, so I feel incredibly fortunate that it is truly only (?) a mechanical issue.....Did both sides go at once for you? did they ever figure out "what" was the cause? Autoimmune? That's what they think mine is.....trigger by 1) surgery then 2) a virus. Guess my hope to be a deep sea skin diver are out! (just kidding....never wanted to be!)

At this point I am looking to get a medical ID bracelet but these are limited to the amount of information they can carry. Due to the condition even the doctors don't know what is most critical to have available. Any suggestions would be helpful.

I have always loved swimming and have in the water since I was little. This year when the pools opened after the hoilday I took my daughter & a friend for swimming. I found that with this diagonsis I prevents me from going under like I used to do. The water bouancy affects the lungs. Without a diaphgram and with the water supporting the body there is no way to get air into the lungs. If I am in the water my lung capacity is related directly to the amount of body (chest area) out of the water. Full breath results when I I am standing in the pool waist deep. The breathing capacity decreases as I lover myself. Just a word. You can dive in as long as you can get right back out!!.

I am currently in Pulmonary Rehab which I think is helping. The orginal testing in Oct '08 for the phrenic nerve was not able to find anything. Since no one has found a cause it is labeled idiopathic-NO KNOWN CAUSE. I went from fairly active one day to emergency room and breathing problem the next. What the difference a day makes. There seems to be no known cure but, possibe idiopathic cure. . I am located in the Washington D.C. metro area where there are doctors who are also learning as I go thru this process. Neurogolist at George Washington are using IVIG treating this as CIDP (Chronic Infammatory Demylenation Polyneuropathy) --eyesight seems to be getting better --not sure of breathing.

I was orginally diagnosised Aug 2008. Ogrinal lung function was 45% but that has increased. I have been involved with IVIG treatments 5 days a week for the past 3 months. Current lung function is about 70%. Improvement is also helped by Pulmonary Rehab which is strenghtening chest muscles since the diaphrgam doesn't work.