Hello everyone. I am 33 yr old old who was just released from the hospital and was diagnosed with MG.
When I went to the ER on Aug 8th they put me in the ICU because I was in crisis. I was on a vent for 16 days. While in the ICU they did 5 days of IvIG and that did not help. We then did 5 treatments of plasma paresis over a nine day period.
I am now home and trying to learn about MG and all my meds.

How did everyone else handle there diagnoses? Does it get easier? What should I expect?

I am so scared I will get sick and put back on the vent. What do I look for to prevent this?


Thanks!!

Hi Newjill.

I can't really give you too much insight into what to expect (I was just diagnosed on 8/29), but so far I've found some great information from the people in this forum.

My official diagnosis wasn't all that difficult to deal with. I had been dealing with symptoms for approximately 3 weeks before making an appointment with a neurologist and had to wait another 5 weeks before the appointment arrived, so I had time to research my symptoms and had a pretty good idea of what was coming. That's not to say it hasn't affected me or been upsetting to me, because it most definitely has. In fact, it's been an exhausting 2 months, mentally, physically and emotionally, but all I can do is look forward to the future and figure out how to live my life with this new challenge.

It sounds like your experience was a lot more traumatic than mine, considering you were in the hospital and having breathing issues. Thankfully, I haven't had to deal with that, but I can't imagine it being easy at all.

I hope you're able to find the right combination of meds and treatments that work for you and your situation. Best of luck and I hope you find the answers and support you need here!

Adam

Hi Jill,

I can possibly try and help, but need more info.

Could you give more details of how and why you ended up on a vent?

What were your symptoms when you came to the ER?

Did you have any symptoms prior to that?

What type of MG do you have?

You lack of response to IVIG, and good response to PLEX suggests MuSK? Where you tested for that?

When I went to the ER my symptoms were unable to swallow, could not walk, hold my head up, double vision, and unable to breath.

I had these symptoms for about 3 weeks and my GP told me it was asmtha.

The reason I was put on the vent was because I was retaining CO2 . Once I was on the vent they found out I have MG. my lungs were so weak that it took 16 days and plasma exchange too get me off the vent.

I am not sure what type go MG I have. I go back to my nero in a few weeks and I will ask.

My problem now is I can't sleep. I can't lay down in bed because I feel I can't breath. If I prop up in the chair I sleep for about 4 hrs and then I am awake.

What were your symptoms? were you able to talk? were you able to swallow your own saliva? were you fully conscious?
You mention that you went to the ER-what made you go if those symptoms were going on for a few weeks? Were they worse? Did you walk there on your own or were you brought by an ambulance?

I am asking all those questions, because I am trying to get a better understanding of the symptoms you had which led to intubation to see if there are ways to predict them so that this will not happen again.
MG is different for different people and if you can learn your own pattern you can gain more control.


It sounds like you still have respiratory muscle weakness. Your breathing muscles have to work harder when you lay down, that is why you are more comfortable propped up.

It is understandable that with such symptoms, seeing your neurologist in a few weeks you are as concerned as you are.

Also, do you have a respiratory physician following you?

You do not mention other symptoms, but I would assume that you are probably still quite limited in your daily activities. Are your breathing difficulties only at night, or do you also experience them during the day? How much for instance are you able to walk before you start experiencing difficulty breathing?

I think you need to let your GP know how you are doing and have him refer you, if required.

Very likely the Neuros who were treating you in the hospital observed your non-response to IVIG and other responses to treatment and have placed you on exactly the right medications as a result. So take it easy now. Don't fret. Relax, take the meds, trust in God, and be ready to call 911 if you have to. If you can get 4 hours of sleep in a chair at this point, take it and be thankful for it. That will change and improve. The worst is very likely behind you now. And one more thing. Get someone to stay with you if you are alone, someone to help you with everything, meals, the works. You should not be alone at this time. This is just my non-Doctor opinion. When things improve contact a local MG support group if you can. Rough start, but you're on the road now. Peace.