Quote:
Originally Posted by bluesky
That's too funny because my real name IS Alice. Seriously! I started going by Ally in college.
Thank you, Faux Alice  , for answering my questions. I really appreciate it!!! And Annie too!!
Good to get the hyperventillation/co2 retention ideas cleared up. What you described (Alice) about overshooting the mark and getting low co2 happened to me a few months ago when I went to the ER for breathing problems. By the time they got around to drawing blood hours later my co2 was low and I got a lecture on hyperventillating.  Fortunately my friends piped in to say, "No, no, she was gray in the face, she really couldn't breathe".
As for the metabolic disease, I have my doubts about whether the blood was drawn correctly. It was done by the awful neuro who said all the wrong things about mg. I was told later that he thinks everyone has a metabolic problem and when I called the metabolic clinic about getting a muscle biopsy they said that they didn't take his patients because he was always making mistakes. Still, I keep it in my back pocket.
I had the night from he** last night, really struggling to breathe. It was awful and horrific. So on Monday I'm calling the neuro to beg for mestinon and I'm calling my sleep doctor to beg for a bipap. I wanted to hold out on the mestinon until I got the pulmonary and emg tests done the third week in November but I just can't take it anymore.
Thanks again both Alice and Annie!!!!!!!!
Ally |
didn't realize that Ally was Alice.
but, I think you can relate to my alice in wonderland experiences any how.
sorry to hear about last night.
I can't believe it, you are not even getting mestinon!
and I thought they were trying to see the "natural history" of this illness on me!
wow, if I didn't have mestinon and neostigmine, I would be pretty much bed-bound and connected to my respirator most of the time.
did they do a sleep study measuring your CO2 levels, and did they see how you breath with the respirator as well?
probably your answer is going to be no. but, it should be yes.
good thing they didn't go ahead and do a muscle biopsy, when you are having such respiratory problems.
I was stupid enough to eventually agree to have one done, and it made me go down-hill fast.
well, at least I got a respirator "thanks" to that, and it also made me understand that insisting on working full time, was not very realistic any more.
but, you are sero-positive aren't you, so why search for some extremely rare condition, that you most likely don't have?
as one of my teacher used to say, when you do tests, without knowing what you are looking for, you are going to end up having very "interesting" results.
alice