Originally Posted by AnnieB3

Tyson, All you are describing sounds like MG. The dizziness could be low O2 or something else.

I wish neuros would take their patients up and down some stairs, with an oximeter, or go for a walk with them or anything but sit there on an exam table and declare they are fine. Maybe ask your neuro to see you "in action."

I am going to again bring up breathing tests. Anyone done those (the full ones with MIP and MEP) lately?

Have you had an overnight oximetry or sleep study done? Monitoring you in the hospital is not the same thing.

I think you need to be careful with neuros when you say "tired." Are you really tired, as in sleepy, or are your muscles weak? Or both? I know that sometimes I say tired when I really mean weak. But weak muscles make you feel so overall exhausted that I often reach for that word instead.

You need to give them as accurate a view of how you are doing as possible. Examples are helpful.

When do you see the cardio? Are you planning on seeing a pulmonologist? Frankly, that still is one of the stupidest things they haven't done. Did they do arterial blood gases in the hospital?

Why do you say Mestinon isn't working? If you are weak and you take it, do you feel better an hour later?

I'm just throwing things out there. It's up to your docs to figure all this out. And it's up to you not to push yourself so hard.

Annie