Anacrusis . . . breathe!

It still boggles my mind that you can't find a pulmy in your area. Shame on my ancestors! Have you called a hospital close to you to see if they have them?

I can't say whether spending money to go somewhere else for a pulmonologist is a good idea. I don't think I would do it.

But here's the thing. If you can find one "in country," a pulmy can do a number of things for you. They can determine what you baseline readings are, which is useful for when you get worse. They can determine what kind of breathing problem you have. Yeah, there are many kinds. With MG, it's normally a restrictive breathing pattern. They can run an arterial blood gas (ABG) if your breathing is pretty bad, to determine how that is affecting your blood chemistry (i.e., carbon dioxide).

Here in the U.S., pulmonologists are the ones who work WITH neuros in a hospital when a patient is having an MG crisis. That's why I find it very odd that you couldn't find one there to help you.

The tests they should do are not just "regular" spirometry but full spirometry and also MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). Those tests are specific for how well you are doing at breathing in and out. If you have never had those done, the results might surprise you! An MGer can be okay at one and not the other.

SoftTalker, Do you have a more informal name? Just wondering. Anyway, it's nice to meet you. The colder weather helps me too but not cold weather. I get just as weak in cold as I do in hot. I'm sorry you've had 2 crisis'. They are quite scary and it takes so much longer to recover.

Anacrusis, What you describe sounds like MG. MG is all about fluctuating muscle weakness. And a pulmy can assess that and make recommendations about potential sleep apnea. They could also do an overnight oximetry to see what your O2 is while you sleep. It can go low without you having sleep apnea. It can be from insufficient MG treatment. Mine went to 66% during a mini-sleep study during my MG crisis, where I slept less than an hour. Who can sleep well in a hospital?!

Even if you fly to another country for analysis and diagnosis, you still need doctors at home for ongoing care! So work on finding a good pulmy close to where you live, in case you do go into a crisis!


Annie