Xanadu,

My heart goes out to you. It took me 8 years to get diagnosed and I completely understand your sense of panicked despair. I'm still not really getting the help I need. I also understand that horrible feeling of not being able to breathe. I was so glad when fall kicked in here and at least if I woke up struggling for breath I could sit by an open window and breath in the cold air.

I don't have any magic answers for you but my advice would be two things. First, take pictures and videos whenever you have visual symptoms that you can record. Second, don't be afraid to keep asking for different opinions. I went through six neurologists before I was diagnosed. That's six AFTER I had received two positive antibody tests.

I have very severe sleep apnea too. If you're having difficulty breathing and feeling choked by the CPAP maybe you could look into getting a bipap which will drop the pressure on the out breath. I have a CPAP (getting titrated for a bipap on Monday! See what an official diagnosis can get you? ) and sometimes I get that same feeling, although I still love it and won't go a night without. I found that I have to turn off the humidifier completely. That warm humid air just shuts down my breathing muscles. Do you have a ramp button on your CPAP? That will make it start very slowly so you won't notice it until your asleep. Also, try different masks, they can feel very different, perhaps one with nasal pillows would help you feel less like you're being suffocated with a pillow. You probably already know all of that, but I thought I'd mention it. Please don't give up on trying to make it work for you somehow. I realize now I had severe sleep apnea from the start (36% of mg patients have sleep apnea - study by Nicolle) and in the eighth year, ironically just before I put two and two together and got help, I developed a raging case of diabetes and the year before had been told that I have fatty liver disease. Both of those diseases are now linked to severe sleep apnea. Plus the fatigue, the mental confusion. Ugh. It's awful.

Try to keep the faith, the road to a diagnosis can be lonely and discouraging and humiliating. I can't tell you what's wrong but I can tell you what you already know - you just have to keep pursuing this until you find an answer.

Ally