Jen, Can you find your way to a pulmonologist? An MGer should really have both a neurologist and a pulmonologist. What they can do is assess your breathing right now and give you an idea of when you might need to come in, if it gets bad. Though with MG, you don't want to wait until it gets "bad" to go in! You want to get checked out when you are getting worse.

An MG crisis can happen suddenly. I'm not saying that to scare you but to prepare you for "what ifs." Knowing what to expect, how to react, etc. will really help. Having your "team" (neurology/pulmonology/hospital) in place really helps. You can get a peak flow meter (probably free from your doctor) and/or an oximeter to monitor how much oxygen you are getting. You can make sure you don't overdo it and get worse. You can have standing breathing test orders in place with the pulmonologist for when you do get worse. They can also do arterial blood gases to see how badly you are doing at breathing air in and out. You can make sure you never get too hot or too cold, which makes both MG and MS worse but particularly MG.

If you are an MGer that has trouble speaking, having a message on tape for a 911 call - in case you are alone during an MG crisis - is a good idea. "Hi, I'm having a myasthenic crisis right now and can't speak. This is a recorded message. I need an ambulance right away." Of course, some dispatchers might think that's a joke but you can actually call your local dispatch and let them know that you have MG and might not be able to talk in an emergency!

There are a lot of ways to set yourself up so that you don't have an MG crisis. Sometimes MG is really bad for certain people and they are more prone to it. Being aware of triggers like infections, stress, lack of sleep, heat, etc. will really help in avoiding one.

So . . . relax! I've had a crisis (2005) and they are not fun but I haven't had one since! No way would I want another one, so I take it easy.

I'm glad you MG/MSers can connect. I don't have MS but my lower leg neuropathy sucks. Having pain and weakness is not fair!

Annie

The Nonin oximeters are great (i.e., Nonin Go2 is $99) but there are other less expensive ones. It's really nice to have one!