Quote:
Originally Posted by AnnieB3
Geez, Erin, HOW LOW were your PFT numbers?
If a MIP or MEP is nearing even -30/+30, you have to have oxygen at the very least. Breathing always gets worse while sleeping and there's no way to know if you are hypoxic at night. That can lead to brain or heart damage, or damage to other tissues!
If they were really low, they should have admitted you. I'm serious!!! AND they should have run an arterial blood gas. Did they?
I am very concerned about you. Sometimes even neuros don't know everything about MG, or don't stop to think about things like stopping breathing at night!!!
I hope you will keep a phone by you at all times. I hope you don't live alone. Please take any and all precautions you need to, such as sleeping a lot and not doing very much.
You can't wait months for help.
Annie |
They did the MIP test three times, as they seem to do (does anybody improve as they go along?). I always do worse as they continue testing, so the scores were -4, -3, and -2. Usually when my scores have been that bad, I've been admitted to the ICU. But I guess he must not have thought it was bad enough for that. They did not do an ABG test. For reasons I don't understand, my pulse oximetry is usually pretty good, and maybe that's why he didn't take further action. But before, when they've done an ABG in circumstances like this, then they've noticed problems. It's all confusing. I don't understand it all.
I do have a non-invasive ventilator at home which I use at night, and I can use it during the day if things are bad. So that is a plus.
I am staying pretty quiet by necessity, as I just seem to be rather tired. I see my local neurologist again on Monday, and maybe she will have more suggestions. I do have a phone with me here, and I promise I am trying to be careful and thoughtful.
Take care,
Erin
08-26-2016, 09:19 PM
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