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I've heard the vocal cord explanation before and it's possible, but I think its more likely a symptom and not the cause. The cause I believe is autonomic neuropathy in the lungs and endothelial cell tissue which in turn affect the brains control on breathing and may affect NO levels in the lungs and mitochondrial dysfunction in the lungs

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I'm in the weeds with pulmonary things lately. Began with a quest to find reason for cognitive impairment - which lead to two overnight pulse oximetry studies, which lead to finding I spend a lot of my sleep time in the 80's rather than desired at least 90%.... Had failed cpap 2 years ago - but apnea was mild so didn't think much of it - neither did the pulmonologist. Next I told the guy about memory, fatigue, pain and slowly rising TCO2 levels on my every 3 to 6 month lab profiles (part of electrolytes) ... from 28 up to 31.... I asked for blood gases and low and behold they were what I'd call a mess.... Last night was first night on nocturnal low flow O2 at 2L. per nasal cannula. But now I wonder if I will need O2 continuously as my Pa02 was only 55% and my SaO2 was 90% - everything else was wonky as well - ph of the alkaline range I think 7.47 if I remember right - add a little met-hemoglobin and a little carbon monoxide - a few points over normal and it's crazy frankly. So on the one hand I need to fix the acid-base issues - and then the other problem is the low oxygen levels per blood gas testing (finger probe was 95% sitting in the office). I know immediately they want to blame obesity for hypoventilation syndrome type stuff - but my blood gas CO2 was not out of the normal range - the bicarb mildly above normal - so criteria for Obesity related hypoventilation is a high CO2 in the blood in the daytime - and well mine? That was just about the ONLY normal thing.... So while none of this is likely helpful - the take home message is - if you have a hunch persist persist persist with your clinicians or find new ones - because in the end I brought all this knowledge on by 'not' ignoring subtle signs on labs and such and not taking 'possible mood disorder, pain or worse sleep apnea' as gospel truth - I knew something was 'not right' and would not allow anyone to push my symptoms off on mood and pain - low and behold we got a little surprise on those gases ... so bless the team for listening to my complaints and doing the best they could - it took coaching on my part - but we may have found a significant player in my symptom set...

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  • 2 years later...

I had the acetycholine receptor antibody test and it was negative.

Can someone explain how or where you can get the acetylcholine antibody test? I am very interested in this but was told it is only a research test and not done clinically but it sounds like it can be done. I would love the info! What type of doctor orders this test? Thank you in advance.

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