Hey Rach,

I'll tell you how I got a CPAP, and maybe it could help you. First of all, the last neurologist I saw, back in the spring made me so angry because I tried and tried to tell him how I was suffocating both day and night and he literally just shrugged. After that I was determined to find a way to record my breathing problems because no doctor was going to help me and even when a test is ordered it seems like on that day I'm miraculously better.

Okay, what I did was buy an oximeter that will record oxy sat rate and heart rate every second for hours. Then, you can upload the data onto your PC with software they provide and see and print a graph and a report that will tell you which percentage of time you spent with an oxy sat less than 95, less than 80, less than 75, etc. Now brace yourself because this oximeter costs $299 (don't know what that is in pounds!) which is a fortune too all of us as we're all strapped financially. But it's the best investment I ever made. When the docs see it in black and white it makes an impression. Doctors, I think, are concrete thinkers and they have to have something to see. They have no imagination. Here's a link to the oximeter: http://www.devonsuperstore.com/PC-68...roved-P75.aspx

The first night I hooked myself up and as soon as I woke up that morning I was dying of curiosity and uploaded the data. Sure enough, I was suffocating all night long. I had some oxy sats dip into the 60's and spent a good deal of time in the '80s. I made an appointment with a neurologist who only does sleep work. Of course being a neurologist, he wouldn't let me talk until he had lectured me for 20 minutes on the facts of sleep apnea (what any idiot can get of the internet in 10 minutes, lol). Then he "allowed" me to show him my graph and report. His jaw dropped. He was speechless. He set me up for a sleep study the next week and it confirmed everything I had recorded on my home oximeter. Here's the funny thing: my eye was really drooping that day and I told him I had tested positive for the mg antibodies and he got all irritated that I hadn't been diagnosed yet. He kept say, "it's pretty simple to diagnose MG, I just don't understand". Anyway, he set me up with a CPAP. He said come back for a BiPAP when you have an official diagnosis (huh!) since he could only give me a diagnosis of severe sleep apnea. But I have to tell you just the CPAP has been a godsend. It's a miracle machine. I have a respironics remstar with what they call C-flex which lowers pressure (not as well as a bipap, but still helps) on the outhale so that does help and it's no more expensive than any other cpap.
I don't think that without the oximeter recording I would have been able to get a sleep study (they cost $2000) and then a cpap. Also, the oximeter reports gave me enormous confidence. I can pretty much predict now what it will show according to how I feel. I can also tell from my current oxysat and hr reading whether I'm heading downhill and need to lie down (at a 30 degree angle) with my cpap for a few hours. I really think this has kept me from completely tanking and also kept me out of the ER a couple of times (they don't do anything for me there either).

So far I have reports that show when I'm sick and lay down my oxygen sats drop into the low 90s and upper 80's, that when I sit up the sats are in the low 90s and my heart rate rises too high, that the sats go down into the 80s and stay there when I am on a plane, and that some days my heart rate goes whacky and bounces between very high and very low. I also have reports that reflect the same data as my official sleep study by an official sleep doctor. I can't tell you how good it is to have proof that I can show. I have an appointment with an mg specialist in California at the end of September and while I'm not getting my hopes up (ok, I am, I know I shouldn't but I'm sick and desperate, broke and scared) I do feel better having these reports to show him.

Anyway, I hope this can help you. I know what a terrible situation you're in because I'm in the same one. Make sure your husband video tapes every horrible thing that happens. Just amass as much evidence as you can. Let them know how serious you are. It seems like I had to waste thousands of dollars going to the Mayo (waste of time) before any doctor really took me seriously. Just because I now had records from the Mayo. It's irrational and stupid, but it's reality.

Just keep shoveling evidence in front of them. I figure at the least the docs that wouldn't help me will look pretty silly when my heirs sue them for malpractice after I die. (Sorry - gallows humor!!!!!!!!!!).