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...
Well i had my first crisis with Myastenia and it is not for the faint of heart. 5 days in ICU and 2 more days before it got out. My care at the ER was botched letting me go 12 hours without Mestinon in the ER. However i learned some valuable lessons i would like to share. 1. You dont want to be intibated if you can help it. 2. for Mestinon there are alterntives in both liquid form and IV form. In the ER i was told there wasnt any but in ICU they were giving it to me in IV which i progressed to the liquid form as soon as i was able to swallow again. Since my diagnosis is only within the last two months its been quite a slap in the face and trying to get my head around what i needed to do since it wasn't in check. I recieved 6 IVIG treatments and put me on a reginment with steroids and Mestinon 60mg ever 4 hours. I dont have the names of the IV and liquid form of the Mestinon but you can bet we will have them on hand if this happens again.
Sorry that you ended up in the ER and ICU. And as you found out, the folks there do not always know what they are doing! Good to hear you are back out again.
Most of us who do have a crisis, have it as a result of under medication by our neuro and at the beginning of the MG. You can assume this is at least partly your doctor's failure, if, like when I went through it, it was because I wasn't prescribed enough mestinon and they had delayed my start of prednisone. Very few neurologists will start us on enough medication and at the same time we are too new to MG to realize that even a small problem with breathing is very critical for us and likely to push us into crisis before we understand how close we are living to the edge until treatment starts to get things under control
Hope that this never happens to you again!
There was a Mayo study done that said for MG folks, rather than intubation, they should start with a BiPAP breathing machine. Probably your ER is unaware of this. Send them this link to read. I got a one of those breathing machines and used it when I had trouble breathing.
https://www.ncbi.nlm.nih.gov/pubmed/18195139
Good Luck with the future
Russ
Mestinon will work now but don't count on it to always work. Your body and immune system will adapt to it and it will eventually no longer work. Sorry for that bit but as you age with this disease it will wax and wane just like the moon.
Each person is different and each person has his or her own treatment that works or not. You take the good day and celebrate and wait out the bad.
I've been told I'm of the 20% who can't expect a normal life. Well hell, what's a normal life? My normal may not be your normal but, I'm still here, I have a beautiful family, a wonderful husband, a great job, and I'm happy. I may not be able to swallow all the time, I may not be able to smile at you, I may not be able to walk every day, I may not be able to run, I may not be able to talk to you, but, I'm here and I'm enjoying what I can for as long as I can. Hang in there. Educate yourself on everything. Question your doctors. They aren’t Gods they are human and just as flawed as you and I are. Find a good doctor that knows what they are doing; Find a good local hospital that you can trust. Get a medical alert bracelet and update your medical info on it. You can also put MG information on this that an ER can access.
The one thing you can learn from these sites and experience is educate yourself and be your own patient advocate. Enjoy the good days and live. Don’t get caught up in the medical or the disease of MG. Don’t let it weigh you down or give you an excuse of not to do. Kick yourself in the ass and get back to living. Crisis will come and go. The one constant is that you still have to live and adapt to the new normal.
Good luck and know that you can do this.