Originally Posted by Annie59

Alice, thank you so very much for this. The sleep neuro (first neuro) I saw at the university gave me a BIG grin when I showed him the sleep oxymetry done the year before and told me he sees no credence in them as the unit on the finger dislogdes so easily. I said I taped it on so it wouldnt and am not a tossy sleeper but he still was dissmissive and ended up saying no sleep study. He sent me to a person who did sleep hygenie work with me. She didnt tell me anything I didnt know. I had to keep a log and show her. When my sleep became at least more normal in time of day and such I told her it was from my extreme low vitamin D getting treated. She never bought that. I actually asked the neuro if low vit D could be a sleep factor. He said no. Wrong.

Alice can you answer a question about a sniff test? I had the sniff test also called a fluoroscope to test my diaphragm. This was the pulmo at Mayos big find. When I called him the next year and said I was worse what wasnt the local docs getting he said he should have seen me again up there.The neuro up there didnt sched a follow up with him and actually it was a little thing that meant nothing.

He said I should absolutely get another sniff done to see if the paralysis is worse he found in the one side of my diaphgram. He said he would do it. I couldnt afford to go back. I asked my pulmo back then and it didnt go anywhere. I am not sure if it is a test that isnt done everywhere or what. I love my local pulmo but wish he would do this.

Annie59

Originally Posted by alice md

Annie,

there are many different ways to test the function of the diaphragm. some are relatively invasive (where they put a nasogastic tube with a balloon to directly measure the force generated by the diaphragm), and some are just blowing into something.
Any one of those tests if done correctly will give you a relatively accurate answer.

telling you that overnite oximetry is unreliable is like telling you that the results of a blood test are unreliable. every test has its limitations, but we still use them to guide us.

A good physician knows the strengths and limitations of the tests he uses and knows how to correlate them with the entire picture. a test in itself is useless, but can give you a lot of information if you know how to put it in the context of your patient's illness.

It sounds to me that you have to find the way to go back to that pulmonologist in Mayo. your local pulmonologist sounds like an excellent physician but he doesn't have the tools to treat you. you need someone that does.