I think I'm having one of those days! There was nothing you said that spun me in the wrong direction! I fixed my post.

I'm glad you got all of that off your shoulders! Isn't doctoring fun?

The runaround you are having is typical of doctors who don't like paperwork. My neuro even did a tier exception for Mestinon for me. He's not a MG expert. He's definitely not perfect. He's nice, but that only goes so far, too.

Don't forget that doctors are actually rated on how many tests they perform, etc. Pretty stupid and not very useful.

Sometimes you have to find a good neuro who is willing to do what it takes to help you, even if they aren't an expert. As you said, maybe the expert will know of someone willing to go to bat for you!

Apnea that isn't sleep apnea? Well, couldn't that be hypoxemia from weak muscles due to MG? Maybe that was an insecure resident who couldn't come up with other ideas for cessation of breathing while sleeping!

You have a right to see all PFTs. That is your right as a patient, so you have to stand up for yourself. They don't have the right to keep that from you. You paid for those tests, after all. MG is all about trends. Sure, if you do the same each time, no biggie. But if a MIP or MEP keeps going downward with each attempt, that shows an unstable MG situation! Then they should do an arterial blood gas. And a walking O2.

There are not many people in the medical world who truly understand MG. So we have to be our best advocates. Calm, patient, logical advocates, even if we want to scream our heads off at them!

You need a patient advocate or someone willing to be "in charge" when you see someone. Seriously. This is similar to needing witnesses in court. Your testimony alone should be enough, but it helps if someone else has witnessed what you have gone through. And can stand up to them to make sure you have the care you need!

Please ask for the MuSK from the expert, plus a redo of AChR antibodies. You aren't on any other drugs, are you? Have they ever tested your IgG antibodies, and all 4 subclasses? If that is low, the AChR test can have a false negative.

I hate this kind of doctoring. As if proof is something that is your responsibility! It's not. They are responsible for figuring this out. And doing nothing does not let them off the "First, do no harm" hook. Doing nothing in your case is as harmful as doing something wrong.

I've been through nightmarish doctoring, where my life was at risk. Not something anyone should have to experience. Definitely not more than once. I feel for you and what you've been through. Let's hope you find answers and can attempt to live in peace! And have adequate treatment.


Annie