Scared to sleep
 

Recently I have been waking up in the middle of the night, and early in the morning with extreme weakness in my throat, and weakness in my diaphram. It used to happen when I was first diagnosed, but I am much stronger all around, and haven't had this kind of touble lately. A few weeks ago, I started having a little sleep apnea, it was happening right after falling asleep once or twice at a time, only a few times. I would fall asleep, barely be unconscious and wake up tingling and gasping for air. Last night, I woke up to use the restroom, and my left arm was dead asleep and numb...but the left side of my face was a little tingly and numb too...then when I tried to walk, my left leg wouldn't take two steps. I sat down on the end of the bed for a minute, tried again, and was able to hobble to the bathroom...Once I was able to walk, it felt like there was a huge lump in the back muscle of the left leg...but the whole leg felt strange. I thought maybe I'd had a stroke or something at first. Of course I think it was the way I was sleeping (I don't remember being in any weird positions, to cause this left side numbness)...Anyway, what's your guys' take on this stuff? Anybody else experience anything like this? I'm afraid to sleep tonight cuz who knows what it will be like :(
I hope this finds you strong and well,
Thank you,
Jessica

Jessica, I think it's time to see either a neuro or pulmy who specializes in sleep studies! It sounds like you need a bi-pap or oxygen. Don't assume it's the MG though. Have you ever had your heart checked out?

Yeah, I've had times when I was afraid to go to sleep. If you can prop yourself up or sleep in a recliner, that might help. Try not to get too hot while sleeping.

I think you should call someone in the morning about this. Probably your neuro. It's not exactly normal to have limbs fall asleep at night! I hope you can figure this out and get some help. It's not fun to see sleeping as the enemy but I sure do know how you feel.

Annie

When I first got MG and didn't have a diagnosis yet, I was very weak and stayed in bed most of the time...I was only able to move around for about 10 minutes at a time for a few times each day. I was in really bad shape, and every time I woke up I had tingly arms, face, legs. I remember feeling out of breath but not gasping for air like you described. I probably should have gone into the emergency room at the time, but I didn't understand what was happening, the MG came on so quickly.

This problem went away over time after I started to take Mestinon so I thought it was MG related, maybe I was sleeping too long in one position.

I think you should call you doctor as soon as possible if you haven't already. It is no fun to be afraid to go to sleep. :hug:

Jessica, Hope you found an answer. I agree with AnnieB3 in the area of keeping cool at nite. It is wnter here and I dont run my heat at nite. Now dont fret as it is well worth the daytime strength I get from this. I actually just had a shift in my body temp from my mega vit D treatments making me warmer and this sure comes on during the nite so I am gonna have to do something a little different. I had a person tell me they put a cooler by their bed so if they woke too hot they had cold gel packs to put on their body during the nite.

I also think a sleep study is a realy good idea soon! Let us know when you can.:hug:

Annie59

I sleep with my window open at night and if I don't I will not sleep very well. I also agree that you need a sleep study.