Have them send you for pulmonary function tests right away and a consult with a pulmonologist. They are essential for an MGer to have. They can do the breathing tests, including MIP and MEP, and run an arterial blood gas. A good pulmonologist will also walk you around with an oximeter on to see what happens when you move, not only when you sit still! That's what mine does. You HAVE TO be evaluated by someone who understands breathing!!! Neuros "get it" but they don't evaluate it.

Are you weak all over? Can you squeeze your fingers or hold your arms up or lift your legs up while standing? When I am worse, I do those kind of "system checks" to make sure I'm not more weak than I think I am.

Can you afford to get a cheaper oximeter at Amazon? The best one, the Nonin brand, is a bit more expensive. It can help you know how your stats are doing in relation to your breathing. If your are having breathing problems, your pulse will also get higher because your heart is trying to pump faster to get you more oxygen.

Did you have the iodine contrast with the chest CT? If so, iodine can make MG worse. Drink lots of fluids to help get rid of that stuff. Are you allergic to shellfish? That could make you have breathing problems after having iodine too.

Blood thinners are not benign. You can become anemic, be open to a bleed, etc. Have they checked your ProTime and INR? Hemoglobin? Did anyone talk to you about what it means to be on blood thinners?!!! Ask your primary doc about what you need to know, what supplements you may need or what to avoid that may make the blood even thinner, etc.

And when in doubt, go to the ER. Not being able to breathe well is an emergency. Period.

I hope you and your docs can figure all this out and soon!!!

Annie

I will keep you in my thoughts and prayers. I hope they find out what the problem is real soon.