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What treatments are possible?

Archie Message
28 Feb 2009, 04:05 AM

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.
Archie Message
1 Mar 2009, 12:29 AM

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.