[shalynn]

I'm trying to decide if I made the right decision last night. I was in bad shape and I wasn't sure what to do. Here's what happened. I will admit I pushed myself way too hard. I ended up in bed. I had a hard time moving my arms and legs, I didn't have enough energy to say more than a few words, and I had a hard time breathing. It was just hard to get air in and out. I was thinking that maybe we should go to the ER. I didn't even have time to get my Mestinon out before I had gone to sleep. I fell asleep so fast!! Does that mean anything? I mean it was so strange, it was as if someone knocked me out! I woke up two hours later, ate a bit and took some Mestinon. I was still weak, but had a bit more energy and could talk and breathe better.

I think if I would have woke up and still been feeling as bad as I did before I went to sleep I probably would have had my husband take me to the ER. Does the fact that I was some better when I woke up mean that I made the right decision by staying home?

I feel as if I'm alone as far as having a supportive medical team. As I've said before, my neuro is three hours away. I do have a supportive PCP who is the one who started me on Mestinon. I guess I could have called him. He is a very good doctor and he even takes care of his patients when they are in the hospital. I'm wondering if I should call him and tell him about this episode?

I am some better today, but I was in bed most of the day. It's so hard to sit still when I still have so much to get done before Christmas.

Thanks for any input.

[AnnieB3]

Next year, start in January getting ready for Christmas!

No, you did NOT make the right decision, in my opinion. Yes, you should still call your doctor. You could've stopped breathing while sleeping. Heck, you may have and not know it. You might've had hypoxemia while sleeping too. Have they even done an overnight oximetry on you?

You are still new at all of this and don't know when your body is in need of rest or more drugs or oxygen or whatever. I've had this stupid thing long enough to know when I simply need to lay flat for awhile or go to the ER. When you are overall so weak that you can't move or can't breathe, that is the time to dial 911.

When in doubt, go the heck in. Don't drive, of course, but go.

And if you don't slow all the way down and I mean do nothing but eat and rest, then you will end up in the hospital. The worse you get, the harder it is to bounce back. And you may get even worse in the next couple of days, which is how it often goes with MG. Do something one day, pay more in the next two.

Maybe it takes having a crisis for this stuff to sink in. Will your family care if things for Christmas aren't "perfect" or wrapped or whatever? They'll sure as heck care if you can't breathe and die. Living with MG means thinking ahead, doing less, enjoying what you can and staying safe. Well, that's simplistic but you get the idea.

Please stop pushing yourself. You WILL go into a crisis. MG may be unpredictable but that is the one thing that actually is predictable. You push, it pushes back.

Take it easy, ok?! And go in if you have to. Your doctor HAS TO know about this too.


Annie

[shalynn]

Next year, start in January getting ready for Christmas!

Point taken. I know I also need to delegate more. I'm so bad about doing everything myself. I do think some of this stems from the fact that I haven't had a neuro tell me 100% that I have MG. My PCP has, but I'm not sure he counts.

]No, you did NOT make the right decision, in my opinion. Yes, you should still call your doctor. You could've stopped breathing while sleeping. Heck, you may have and not know it. You might've had hypoxemia while sleeping too. Have they even done an overnight oximetry on you?

I'm calling my doctor tomorrow. He has a cell phone number that he answers himself. I think that's pretty amazing! I had a sleep study done a few years ago which showed some mild sleep apnea, but that's all.

And if you don't slow all the way down and I mean do nothing but eat and rest, then you will end up in the hospital. The worse you get, the harder it is to bounce back. And you may get even worse in the next couple of days, which is how it often goes with MG. Do something one day, pay more in the next two.

I am not doing very well, but I don't think I'm worse. I started my period (I know, TMI), and it seems as though my symptoms are always worse during this time of the month. I'm sure that was a factor in how bad I felt.

Please stop pushing yourself. You WILL go into a crisis. MG may be unpredictable but that is the one thing that actually is predictable. You push, it pushes back.

Take it easy, ok?! And go in if you have to. Your doctor HAS TO know about this too.

Annie, I think I'm afraid to go to the hospital for fear that they will dismiss me. I mean, I've been through so much with this. Deep down I know it's better to be safe than sorry. I laid in bed yesterday for most of the day, today I went to work for a few hours and shopped for a few hours. I did take breaks in between and took my Mestinon (on time). I did more than I did yesterday, but not nearly as much as I did a few days ago.


Thanks for being so encouraging and supportive. It means a lot to me. I get so scared some time. I lost my best friend suddenly a few months ago and it has really made me see how fragile life really is. I want to do all I can to take care of myself. January 2 I'm starting my diet. My goal is to lose 30 pounds by May. I'll have one child graduating from High School and one from College. I want to look and feel good for those graduations and parties.

Merry Christmas!

[suev]

Are you sure you didn't 'pass out' from low oxygen?

Yes, I would definitely talk to your doc about this episode and ask if it might be advisable to get an oximeter so you can monitor your O2 levels if (when) something like this happens. Also find out how he wants you to handle these incidents.

This may have been notice from your MG....kinda like if you don't slow down and listen to what I need...I'm gonna knock you out!!

Christmas is/can be a hectic and stressful time - - let's try not to spend it in the hospital!

Take extra special care right now.

[Annie59]

When I am worse in the past 2-3 months I have noticed that when I take my mestinon at a certain point of it kicking in I get INTENSELY sleepy. I can hardly sit up and doze off sitting up! When I would lay down I was fall asleep immediately! One week it was particularly bad and I was about to call my doc when it eased up. I agree that you need to have your docs, both neuro and pcpc know about this.

Annie59

Originally Posted by suev

Are you sure you didn't 'pass out' from low oxygen?

Yes, I would definitely talk to your doc about this episode and ask if it might be advisable to get an oximeter so you can monitor your O2 levels if (when) something like this happens. Also find out how he wants you to handle these incidents.

This may have been notice from your MG....kinda like if you don't slow down and listen to what I need...I'm gonna knock you out!!

Christmas is/can be a hectic and stressful time - - let's try not to spend it in the hospital!

Take extra special care right now.

[shalynn]

Originally Posted by Annie59

When I am worse in the past 2-3 months I have noticed that when I take my mestinon at a certain point of it kicking in I get INTENSELY sleepy. I can hardly sit up and doze off sitting up! When I would lay down I was fall asleep immediately! One week it was particularly bad and I was about to call my doc when it eased up. I agree that you need to have your docs, both neuro and pcpc know about this.

Annie59

Annie, Thanks for your reply. I haven't noticed Mestinon making me sleepy. I guess that's a good thing since I'm already tired so much of the time.

I hope you are doing well today. I know you are dealing with a lot right now.
Hang in there!

[shalynn]

Originally Posted by suev

Are you sure you didn't 'pass out' from low oxygen?

Yes, I would definitely talk to your doc about this episode and ask if it might be advisable to get an oximeter so you can monitor your O2 levels if (when) something like this happens. Also find out how he wants you to handle these incidents.

This may have been notice from your MG....kinda like if you don't slow down and listen to what I need...I'm gonna knock you out!!

Christmas is/can be a hectic and stressful time - - let's try not to spend it in the hospital!

Take extra special care right now.

I don't think I passed out. I think I was just so exhausted that I fell asleep. It was sort of scary how fast it happened though. I will look in to getting an oximeter.

I will find out exactly what the doctor wants me to do in these situations. I realize now how I probably should have gone to the hospital, or at least called the doctor. I don't think any doctor has ever seen me when I was that bad. Maybe that would help prove a point to them.

Thanks for your input.