I do not have ALS but I thought maybe someone here would have some insight to help me out. I was "diagnosed" 12 years ago with with bronchiectasis and interstitial lung disease. That was the initial diagnosis, then it was changed to simply restricted lung disease. They didn't know what to call it and told me I was an enigma to them because I wasn't getting worse.

Finally, the doctors looked at my diaphragm and after an EMG study diagnosed me with bilateral phrenic neuropathy. My phrenic nerves showed no response at all so my diaphragm is completely paralyzed. The doctors are telling me that diaphragm plication is an option and the surgeon says he thinks it might really help me. Is there someone here that has had this operation and can tell me if this is a good choice for me? My FVC is only 32% of predicted probably because my diaphragm is paralyzed on both sides.

Thanks!