Thanks so much!

I'm just going to ask my doc, see what she says. Here, there is no one who gets intermittent resp support, it is never used as a treatment for MG.
So, it is very different and it is expensive.

But,for me it just seems like a healthier next step.

Alice, do you have any advice I can use to convince my doc (she's saying; it's going to be rituximab and/or prednisonecocktail)?

First, it is eventually less expensive than other treatment options.
It is (unfortunately in my opinion) not commonly used as treatment in MG because there is not enough awareness of the importance of adequate respiratory support in this illness. Most neurologists see it as black and white-crisis or not crisis.

I too did not receive respiratory support for MG, but for an "unexplained neuromuscular disease" causing recurrent respiratory failure for which there didn't seem to be any effective treatment. There are still neurologists who would argue that the diagnosis of MG is my case is questionable, although many do accept it now. ( it is based on direct measurement of respiratory muscle force instead of indirect measurement by SFEMG and on anti-MuSK antibodies that were not found in the usual assays, but in a cell-based assay which is still considered experimental)

Regarding NIV, one thing you have to understand is that (as my respiratory physician recently put it nicely) even the most sophisticated respirator can't replace the normal natural pattern of breathing. So, possibly it is not such a bad idea to try and attain remission with Rituximab (if possible).

Those are obviously not easy decisions, and regardless I think you can benefit for now from proper NIV support.
BTW, respiratory support is being used in certain forms of congenital MG in which there is resp. muscle involvement, so I don't see why not in autoimmune MG. Also, NIV has been used successfuly in autoimmune MG to prevent need for intubation in patients with respiratory crisis.

Good luck and hope you feel better soon,

Alice

I realize this is a little off topic, but I have had such good results with my CPAP (Constant Positive Air Pressure), that I wondered it if might not be a good support for your diaphram?

I know when i'm short on oxygen, i get "stupid", it definitely affects my cognition; as opposed to when I am high in lactic acid in the muscles, which is much more a feeling of panic. In my case both are the result of the arterial system's inability to uptake an enzyme that keeps it flexible and permeable, so gasses, nutrients and wastes can pass the capillary walls.

This means i have trouble getting oxygen in as well as getting CO2 out, and nutrients in, and wastes (such as lactic acid - a byproduct of muscle exertion) out. I always favor a treatment that does not involve drugs, if at all possible. I hope you find something that lets you breathe, i know that terrible feeling of gasping.

Best Wishes
StormE1