Hi all, I'm new to the thread, 20 yrs into MG. The low points I'm experiencing are getting lower and I've had some prolonged respiratory distress. I really resisted going to the ER because I am terrified of being on a ventilator as a conscious, competent patient. Has anybody had to be intubated and ventilated to pull out of an MG crisis? Can you tell me what its like so I can manage my fear and have some reasonable expectations? Next time this happens I really need to go for help. Thank you!

HI.....i wasnt intubated for MG altho when I first developed MG I was
basically in MG crisis. I was however Intubated during open heart surgery
and woke up still intubated. It wasnt the most pleasant feeling but I could
stand it and adjust to it.

I was just in the hospital for an exacerbation. I came home yesterday. I wasn't intubated, but my breathing was very compromised and they were watching me in ICU in case I did need to be intubated. They were able to initiate IVIG treatment, and that started helping, along with using the non-invasive ventilator (BIPAP machine). I have had this happen several times now, and each time, it has gone the same way.

I have another friend who has MG and has been intubated. She told me not to be afraid if I do have to be intubated at some point. While it isn't fun, of course, she said it isn't as bad as you imagine and that it's better if you can just relax, and let the machine do the work...not to fight it. She said it was okay and she got through it. I hope all of us will be okay, get the treatment we need along the way, and not end up in crisis and needing intubation, though!

Take care,
Erin

I had a crisis in Jan, this year. I was ventilated for 3 days. It could be worse, but no fun. At least is worked so far. Hope you can avoid it
FREDH

I was intubated for 7 days during my last crisis - no fun, but not bad either. They kept me pretty sedated so I didn't have a lot of urge to move. My oxygen sats dropped from 93 to 39 in about 10 minutes - no choice to but to intubate. Luckly I was in the right place, ICU. If I had been at home, I wouldn't be here to write this message. Believe me, they don't want to intubate unless they absolutely have to. Will do a watch in ICU and intubate only if absolutely necessary.

Better to be where you can get help if you need it rather than leaving your loved ones wishing you had been where you could have gotten help.

Good Luck!

But I spent a lot of time with my CPAP machine. I was so tired before I got 'rebooted' by plasmapharesis, that I had to nap quite often.

Every guy with MG that I've talked to at MGFA meetings is on one. I wonder about that correlation.

If you go to the hospital because of respiratory distress, it doesn't mean you will get intubated immediately. Please don't refrain from asking for help because of this fear.

I always have this emergy information with me and my family knows about it too: for example, the brand and dosage IVIG, and the use of a bipap for non invasive ventilation. In my experience, when you still have time to even consider or wait, getting support from a bipap can often help you prevent needing getting intubated. It can take some burden of you diaphragm, help you get through the days until ivig / plasmapheresis kicks in.

Of course you can't control everything, and sometimes a crisis hits you hard, like when the flu hits you and you're from normal to boiling hot fever in 24 hours, this can trigger a crisis pretty fast an may need intubation. This, however, be it not a fun experience, you really do need at that moment and you are very, very sick: your body and mind somehow accepts it better. And sometimes they give you something sedative and that helps too.

So please, stop worrying about what ifs and maybe's (I know, I do it too), because this stress isn't good for your MG.

(Important: a bipap not a cpap; not recommended for MG, especially not in near crisis situations, because with a cpap you have to breath against pressure).

Wish you the best