At 8:40 last night, I started having breathing trouble. It got to the point to where I could only take short puffs. My son called 911. I can't recall too many details because I was trying to remain calm, and my vision was becoming pretty fuzzy. It seems the ambulance driver couldn't find my house, and it took sometime for them to arrive. My sister came in and she got scared because she said I looked like I was going to pass out. All I know is I started breathing again, like everything went in reverse. The short puffs of air started getting a little longer, and I finally got a good gasp as the paramedics walked in the door. I looked like I just stepped out of the shower with my clothes on. Soaked with sweat. When I got to the hospital, it was 10:25. They did all kinds of breathing tests and blood work, called my neuro, and sent me home at 1 am, with instructions to call him in the morning. So, what the heck happened to me? Is this what MG is going to do to me whenever I don't expect it? I'm setting here with a headache, can't sleep, and the doc tells me to take 90 mgs of mestinon every 4 hours, to set my alarm so I can take it in the middle of the night. I just ask my neuro yesterday if I could take the Mestinon time span, and he said he would have to consult with the other doctors first. I want another neuro. I'm tired of dealing with a resident. I can't wait to hear what he has to say when I call today.
Oh, and get this. My son said when the dispatcher was asking him the routing questions (chest pain, choking, ect.) he told them that I have Myasthenia Gravis, their reply? What's Myasthenia gravis.
I don't know why I couldn't breathe, or why I started breathing again, but it scared the crap out of me. and the er doc just looked at me like I was out of my mind.

Hello Tim,

I'm really sorry to hear that you are having such breathing trouble. My guess is that you started breathing again because some adrenalin kicked in and made it so. It's super scary when you can't catch a breath and you start to feel faint. As much as possible you need to stay calm. Many of us have experienced this, only to be taken to the hospital and told that we were having an anxiety attack. You need to avoid any appearance of anxiety when you have to go to the ED. You need to build a medical profile of yourself and your medical history. Carry it with you anytime you have to go to the ED. Having said that, I'm a little shocked that you are on such a high dose of mestinon so early in the game. Mestinon can exacerbate your symptoms if you are taking too high a dose. Many doctors believe that this drug should be a tapered increase like the others to avoid this type of response.

It's not that I doubt that the prednisone is causing the weakness but what tipped me off is that some things appear to be improving while others are worsening. If your neuro isn't sure what to do next and you are uncomfortable with the calls that the neuro is making then you should try to find a more experienced MG doctor. Specifically, look for a neuromuscular specialist that has extensive experience with MG. There are links on the site for help in this area but feel free to ask for recommendations in your area. You are not alone in that area of the country and it sounds like you already made a local friend on here that might be able to help you out in that area.

Good luck to you and please keep us posted on what's happening.
Aloha and hugs,
Angie

Well, my neuro is putting me back in the hospital tomorrow. He informed me that he wants to monitor me until he can get the meds balanced out, plus do the IVIg . I am relieved yet nervous because I don't know where this road is taking me. Everything seems to be coming in waves. One minute I'm up, the next I'm down. My breathing seems okay for the moment, but it wasn't so good this morning I want to eat, but my stomach ain't having it. Weakness in the arms is still there, but seems to be getting better. My head feels like a helium balloon. I don't want to sound like I'm whining, but I'm just nervous, and this seems to be the only place I can turn to where you guys understand what's going on. Sometimes I think the doctors aren't even sure. Talk to you guys when I get back home.

Tim...You are doing the right thing by going into the hospital... Sounds like a myasthenic crisis to me. The strange thing about this disease is that it is at its worst in the beginning. And it happens so fast! Soon the prednisone will sort you out and the imuran, too. this iws a scary disease, but it is well-understood and there is great treatment for it (with a few side effects!)

Mestinon is a special drug, and getting your dose right is hard -- a sign that you are taking too much is sweating... Also, a mestinon overdose looks just like MG! So it is a balancing act...

Good luck, and don't worry about anything job related -- stress contributes to MG. You are protected under the Americans With Disabilities Act from getting fired for being sick -- if you do get fired, you will make an employment lawyer very happy to get such a slam-dunk case. Don't worry! ~joe

Tim,
Look in the Links Group at the bottom right hand corner of the main discussion page and be sure to have two copies of the materials to take with you to the hospital. Also take your Mestinon and keep it where you can get to it. Where they don't understand MG, sometimes you cannot get it on schedule. Take two copies of your manual and medication lists, because you don't want to give up your only resource (some people can reach the links on their phone and laptop, but its good to have a hard copy). The pamphlets are especially helpful in acute situations because they are short and to the point.

http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news/discussions/messages/14175275

We have no way to keep this on top of the main discussion page. Please also read about the Single Breath Count. These are ememrgency materials we all should have in hand, in car, etc. MG advocate is an emergency dispatcher and brings his knowledge to these discussions, and personal stories of having or not having this knowledge available has emphasized the importance. The most important thing to have in the hospital is your own knowledgeable advocate, someone who can speak for you when you can't and keep an eye on medications and hand washng in particular and you in general. MG is rare and crisis can be confused with many things. Having your neurologist prepare for your admission whether through admissions or ER can save a lot of time and miscommunication.

Good luck, b.