I'm really struggling. I've never had this before. I'm recently diagnosed (2 weeks ago) and not on any meds yet. I've had trouble all day, woke up a couple times in the night and couldn't breathe, even took a few seconds to get the breathing started again which was frightening.

All day today I was exhausted, hoarse, trouble talking, tongue wouldnt' work, legs so weak they were shaky, lost my balance to the point of falling over if I got out of bed.

By afternoon I was struggling to breathe. My chest feels really tight, and I can't breathe in very far at all. My neck and throat feel really tight too, like someone is sqeezing them. I feel like the air won't go any further than my windpipe.

I tried the breathing in deep and counting out loud and now I can only get as far as 8. Around 3 hours ago I could count to 12-15.

I do NOT want to go to the ER because I have IVIG again tomorrow (I'm on it for small fiber neuropathy) and I"m having a chest port put in Wednesday. I'm so scared they'd admit me and all that will be ruined, not to mention finishing up gift wrapping.

What should I do? Can I just go to sleep and ride this out?

Tracy, here's what I know about MG: it can decline drastically all at once. Trouble breathing is a true medical emergency when you have MG, because even if you are not in danger this second, you might suddenly get much worse. You sound like you're starting a crisis, which is life-threatening.

I think I'm the only one on-line right now--if the others were here, I know they would say the same thing. My neuro said it to me just the other day: don't fool around. He said if you have trouble breathing, call an ambulance.

I hope things work out for you. I understand your reluctance to go in, but this is an emergency. You can't ride this out.

Abby

I'm with Abby, mg can go bad very fast. Better to get to the ER and have them check you out. I understand how you feel, but breathing is something you can't play around with.
Kate

Tracy, Ditto on what these guys said. Don't be stupid. Dial 911. I am serious. You don't know how fast your MG will get worse. And it can get bad so quickly that you may not be able to even dial a phone let alone talk.

I'm not trying to scare you just trying to get you to realize that you are having all of the warning signs of an MG crisis. You CANNOT wait. You can die. Please dial 911 and get help tonight. They may need to do much more than IVIG, like plasmapheresis, oxygen, etc.

PLEASE, just do it. It doesn't matter if you are not "officially" diagnosed or being treated. In fact, some MGers have a crisis as their first experience with MG. They can diagnose you in the ER too.

Again, you HAVE TO go in. At this point, there is no other choice. No offense to anyone but screw the presents. The BEST present to your family will be the fact that you survive this. The faster you go in, the faster you go home. You are a newbie . . . you have to trust those of us who have had a crisis and truly understand this stuff.


Annie

I add my voice the the ones who have already responded. Go to the ER now! I speak as someone who spent a weekend unable to sleep because of kidney stones who ended up on a vent because her lungs stopped working altogether! Fortunately, I was in the hospital by the time my lungs quit working so they were able to vent me. If it had happened at home, I wouldn't be here now. It can happen very quickly with MG and you can do nothing about it at home! Go in now!

unless you have ICU equipment at home, you should be in the hospital now.
I hope you are!

How are you doing? I hope you went to the hospital for treatment. I know it's scary and sometimes it's hard to know what to do, but it's better to be safe than sorry.

You'll find a bunch of caring folks around here. Things may be slow from time to time, but there's always someone around to offer advice or support. You just have to ask.

tracy please get to the hospital asap! i hope you are getting helped and am praying for you

Tracy9, I hope you got help or improved greatly. A breathing test of 10 means a hosp is to put you in ICU. I have never been below 10 or at 10. I was at 16 when I was admitted by a neuro for suspected MG crisis. I could barely get a few words out and barely walk.

I am gonna send positive thoughts and liight and love your way today. I truly HATE ERs too because I have been treated so horribly but at the point you explained you need to be in the hosp for quick intervention. I am so sorry I was away and didnt see your message.

Annie59

Tracy~I was just wondering how you are doing? Did you end up going to the hospital? I'm guessing that that might be the case since we've not heard from you. Although, it's certainly a busy time of year and of course you don't owe us any explanation. Anyway, I hope you are feeling a lot better.