Quote:
Originally Posted by AnnieB3
Yeah, its me asking a question. 
When I get up at night to go to the bathroom, my O2 saturation plummets. It has gone down as low as 87% but last night it went down to 85% and I could not breathe well. Even had a little chest pressure. It goes back up to 96% - 98% after a few minutes but sometimes it takes longer - like last night. Yes, I'll bring it up to a doctor at some point, although they already know about it and haven't done a damn thing yet (been a few years of that going on). Though they don't know about the 85% yet.
Has this happened to anyone else? Or, should I put it another way, has it happened to anyone who has an oximeter and then noticed it?  It may be happening to some of you without you knowing about it. But do you ever get short of breath getting up at night? I know that muscles are weaker while we sleep. I simply cannot get a sufficient explanation from any of my doctors. Well, actually, no one has come up with even one explanation.
I've had a couple of overnight oximetry tests that showed nothing lower than 88%. My pulmy has declared 88% to be the magical cutoff for hypoxia or getting help. When it's 85% when you are awake, even if it's after getting up to pee, you'd think they might be concerned. I was. Supposedly my heart and lungs are fine. And since my neurologist didn't even bother with a clinical exam this last time, I "suppose" that my MG is fine. Wow, did you know that neuros are so smart that they can now tell how your MG is by simply looking at you? If they can, why can't they diagnose MG that way?
My suspicion is that it is somehow related to a circulatory issue. If you fill a "inflexible glass tube" with water and then "see saw" it back and forth, the water runs freely, right? But if you have a "flexible tube" artery that is not all the way open and go from a horizontal to a vertical position, wouldn't that affect the blood flow and, therefore, the oxygen? Sounds logical to me.
I'm super tired of doctoring and almost don't want to go through feeling like a ping-pong ball again, with doctors in charge of the mallets. I'd be grateful for any ideas you might have. Thanks!
Annie |
Dear Annie,
I will be brief and straight to the point, and use as little sarcams as possible ( I wrote a previous post which was too sarcastic, so I deleted it, and wrote another one instead)-
I think you need a Bipap, to use during the night and possibly during the day, when you experience significant breathing difficulties, and if at all possible, you also need better treatment for your "well controled" MG.
day or night O2 sats, are not a good indicator for respiratory muscle weakness, or the need for respiratory support. they can be near normal even in the face of significant respiratory muscle weakness.
parameters that apply for the diagnosis of sleep apnea are quite irrelevant for diagnosing nocturnal hypoventilation due to neuromuscular disease.
clinical symptoms on the other hand are! and those include : early morning awakening with shortness of breath, day time sleepiness and fatiuge, morning headaches, irritability and difficulty in concentration etc.
portable oximeters (even the best in the market, like I have) are not very reliable, so I wouldn't put too much emphasis on that. you are correct in assuming that those results are due to problems in circulation, but it is the circulation in the cappilaries of your finger, which can depend on temperature, movement and many other irrelevant things.
To be practical, you need to have a sleep study that checks CO2 levels, which is a much better and more reliable and sensitive parameter to assess nocturnal hypoventilation. (some pulmonologists I have met think it is unimportant, but I try not to put my care in their hands, nor do I put it in the hands of those that think the world is flat or that rain is caused by god's tears, although they are fully entitled to believe what ever they want).
hope this helps.