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Thanks again mnatale. Not going to lie, things are really tough right now. With all my normal test results, and the fact I'm only 30, people are beginning to think I'm crazy. Finally have some pulmonary tests coming up that may shed light on my breathing issues. Doctors get very confused when someone has breathing issues, but their lungs and heart are fine. Also, hard to prove you can't breath in your sleep at the ER. This isn't normal sleep apnea either. I wake up feeling burning on my skin, gasping for air, headache, and increased heart rate. Also noticing my speech is starting to slip. Sorry for venting a little. It's just really tough dealing with these symptoms and having everyone saying you are fine.
 
One quick thing I forgot to mention... Getting CT scan with contrast of diaphragm tomorrow. I know a sniff test is typically used, but Dr said he couldn't get that ordered without other indications first. Could the CT show anything useful?
 
A chest CT (I assume the study is not limited to the diaphragm) could surface or confirm a malignancy, some kind of intrinsic lung disease, clot, bleed, etc. It could also add information about the position of the diaphragm if the chest X-ray (assuming you had one?) suggested any issues.
 
Chest x-ray was normal, so I'm guessing no positional issues. I requested a Sniff test but pulmonologist denied until we see results from other tests first.
 
i’m so sorry you are dealing with this. being “in limbo” as my husband called it, was, in a sense, worse than getting the diagnosis, he says. we are praying for strength and peace for you, and for wisdom for the doctors.
 
A ct first is common. Since mslignancy is more common than respiratory onset als. It will show your phrenic netve which "feeds" nerve impulses to your diaphragm. This and ruling out cancer are very important steps. Once you have the pulmonary function testing, the doctors will have a much better idea.

For what its worth, my husband presented with shortness of breath. It was a serious fight to get the chest xray ordered until his heart rate and ekg were abnormal. I have also had shoryness of breath but I had sleep aonea, migraines, and panic attacks in my sleep. Thst is how my anxiety presented.
 
Thanks again for all your input and well wishes. CT of diaphragm was normal. Pulmonary test is this Friday and Sleep study is scheduled for 8/17. I'm genuinely concerned about the sleep study because I'm only getting about 3 hours of sleep right now because of my breathing worsening. It feels like I'm having to manually breathe all day, and at night my automatic breathing seems not to kick on.. bizarre I know.. very confused by this whole situation
 
Sorry for your troubles. My husband had no limb issues but he couldn’t breathe and was weakening. Would nod off frequently. It was awful. That was 2 years ago. It took a year to get als diagnosis which seems common. His sleep test showed 135 events per hour. A bipap saved him and still does. He is weakening in his whole body but still has no bulbar symptoms, no pain, and can eat. He struggles to use walker to get to bathroom, but he fights on. On his bipap/trilogy 20 hours a day. As you said, respiratory onset is rare. We went to als clinic which helped with diagnosis and final planning. Hospice has supported us since January. We are helping nurses learn about this rare disease. We wish you all well.
 
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