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
Quote:
Originally Posted by alice md
just a small point to add-
an overnight oximetry may miss significant respiratory muscle weakness. As respiratory muscle weakness may lead to only a minor drop in the O2 sats, that would be considered within the normal range.
So it is important to check CO2 levels as well. Not all sleep labs are equipped to do so, and not all know how to interpret those results correctly! 99/100 sleep studies are done to assess sleep apnea (which is very common) and only very few for neuromuscular problems.
I can tell you my own experience- an excellent pulmonologist I consulted suggested by e-mail (due to geographical distance), that I should have a sleep study with CO2 measurements. my local pulmonologists sent me for that. the CO2 levels were increased, and I had a rapid breathing rate during the test, but the test was interpreted as normal because there was no accompanying drop in O2 saturation.
A few months later I had a similar test done again but this time by a neuromuscular respiratory physician. she also did a very extensive evaluation of my respiratory status. she showed me the results and told me that a less experienced clinician could have easily missed my significant fatigable respiratory muscle weakness because of the misleadingly normal baseline CO2 levels and near- normal overnite oximetry.
she was also the one that told me that my episodes of respiratory compromise are real and require respiratory support.
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