Dear Annie,

I hate to give medical advice to people in "cyberspace", because I think that even when a patient is in your office, you can take a full history, examine them, have all their medical paperes and test results in front of you, you can still go wrong, so obviously when you only have a glimpse, how can you really know?

more then that, neurology, and pulmonology are not in the realm of my expertise, and my knowledge is purely autodidactic, and based on the experience of one patient, that happens to be me, with all the limitations that go with that.

so, I may definitely be wrong, and it is OK if you tell me that what I am saying is complete BS and how can I know, but the way you describe your symptoms, sound to me like you have significant involvement of your respiratory muscles that very likely leads to CO2 retention.

if your O2 sats only are the only thing that is measured this can be easily missed, and it may appear that you are doing pretty well, when you are really not.

the reason I am saying this, is that if I look at what has helped me most, over the last two years, it was my respirator. it was given to me, in order to save my life, because I had reccurent and quite frequent episodes of acute respiratory failure, and could either "move" to the ER, or have some mode of respiratory assistance at home, and I was very fortunate that my pulmonologist thought of this option.

but, at some point I realized that I do not have to be in a life threatening situation in order to use it, and started using it "prophilactically" every time I started feeling "wiped out".

it took a while and a few encouters with some of the more arrogant memebers of my profession to get it properly adjusted . but, now I can really do so much more then before.

Thanks to that, I was gradully able to go back to work, and even go to an international conference to present the results of our research, and even get to do some sight seeing with my husband. when a few months ago, I could hardly even write and submit the abstract to that conference.

hope this is of some help,

alice