Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Had to go to ER at midnight last Saturday night. I have been having trouble breathing. Just diagnosed in April 2019, had thyrectomy in May with thymoma. Started radiation monday may 9th. Prior to that my MG has been getting worse.
I was put on a B-pap, that really helped and regular oxygen during the day. Have been receiving IVIG everyday and mega doses of steroids. Doctors say I am improving. Hopfully will be moved to intermeddiate ICU today and then to a regular room.
Has this happened to anyone else so quickly after diagnosis? I have no idea how long I will be be here. Radiation has been stopped for now.
They are planning to start me on Solaris in two weeks after I get meningitis vacine before I leave the hospital.
comment are welcome
Marcy
Yes, we can crash quickly after diagnosis. By the time we have symptoms of MG, we are generally pretty far into it. Some sources state that we can be mostly symptom free with nearly 80% of our muscle receptors not function, so when a few more percent are blocked or destroyed we can crash very fast.
I went from diagnosis to ICU in a few weeks before getting stronger treatment and getting back out again.
The good news is that our muscle receptors grow back rapidly when the antibody attack is removed-- and that can mean only a few weeks or so before getting better if the treatment works. Usually IVIG can bring us back in a week or too, but of course everyone has different responses and so one can never say anything certain.
Let us know your progress. Hopefully it will be soon. I used a breathing machine too and that was very helpful and kept me from having to use a breathing tube. I found that when I was at home and having trouble I could use it for 20 minutes and get through the rough times.
Good Luck
Russ
This is a place you can come and post and share your thoughts. Even if you want to vent, we understand. Please let us know how you are doing.
Best wishes for peace,
TJ from CA
I already have a Bipap machine to take home with me, so that is peace of mind. Nothing worse than not being able to breathe! I thought double vision, neck weakness, jaw weakness was bad! nothing compare to unable to catch your breathe.
I hope you are able to go home Monday. Once you start feeling stronger, try to get some exercise and build from that. Baby steps.. You can do this!
TJ