Annie, It would really help to know what your breathing tests show. It doesn't really matter what our breathing is like, only yours.

When my chest wall muscles get weaker, my oxygen saturation goes down. I feel like my my chest is "tight" and I can't get a full breath in. When I walk around, my pulse goes up higher than it normally would. The heart is compensating for my lack of oxygen and trying to get my body more by beating faster. Does that make sense?

I know that neurologists tend to pooh-pooh pulmonary testing and say that it's all effort-dependent. Yeah, they mean to insinuate that we are not trying hard enough! That's a load of BS.

Has your pulmonary doctor ordered an arterial blood gas? If not, I would highly suggest you do that. Tests like that are not effort-dependent and can be very revealing.

Have you seen a neuro-ophthalmologist? Have they defined the fact that you have fatigable ptosis?

You may have to gather simple, yet concise and factual information about your health, without anything else to muddy the waters. Doctors think patients are "hypochondriacs" when they give them too much info. Again, only idiots would ignore clinical evidence that another doctor has found, like breathing tests.

Did your pulmonologist define your breathing as "restrictive" or "obstructive" or any other way?

What struck me, when I took some time to think about your post, is that you might be thinking that your appt. would've gone better if you only explained your breathing episodes/weakness better. Well, these doctors went to medical school and it's up to THEM to figure it all out. Don't blame yourself for their inability to help you!

I hope you can figure all of this out. Do not allow one bad apple to ruin your doctoring experiences.