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Old 11-18-2015, 02:06 PM
JerzyBoy JerzyBoy is offline
Junior Member
 
Join Date: Sep 2015
Posts: 15
8 yr Member
JerzyBoy JerzyBoy is offline
Junior Member
 
Join Date: Sep 2015
Posts: 15
8 yr Member
Default Thank you

I wanted to post a quick thank you for all of the advice I received.

From the time of my last post, I have been in the hospital, mainly the Intensive Care Unit. Needless to say, I have gone through hell. When I finally went into the emergency room, I was close to complete respiratory failure. Luckily, I was not below 1 in the one test which would have forced intubation (I was at 1.1) and I refused to allow them to do it. Due to my swallowing issues, I was not given any food or fluids by mouth for over 4 days and also refused the feeding tube down my nose. I was given IVIG over 5 days and my respiratory rates improved enough for me to finally be downgraded out of ICU and finally to be released. But I still feel like hell. I had a barium swallowing test which showed the weakness in the throat while swallowing, but they don't suspect any issues with the food going down to my lungs as long as I adhere to a soft diet and am careful, I shouldn't have more choking issues. I just need to take my time and stop eating when I am fatigued. The doctors upped my Prednisone to 40mg while there, but I'm already tapering back down to 25mg. They also greatly increased my Mestinon to 180mg time release twice a day and the 60mg Mestinon 4 x's a day, every 6 hours. I feel a lot better, but still far from "normal" and far from not being sore, stiff and scared. I had a CT scan performed and amazingly I do not have a Thymoma and in fact, my Thymus gland is of normal size. They are still suggesting I have it removed, claiming that due to my age, health besides MG, etc, I am the perfect patient that could benefit from having it removed. I'm petrified of the surgery, but considering how serious my symptoms have been in the relatively short amount of time I've had the MG, I think I am going to go through it. I currently have an appointment with a surgeon and since I don't have a Thymoma, it is not urgent, but I'm thinking to have it done early next year.
Has anyone had experiences with IVIG they'd like to share. The one I received is called Flebogamma and I received 36g a night for 5 nights. I believe most of my improvements have been from the Mestinon and the only scary change I've seen is that I had double vision, but over the past week, it has got much worse. Looking in the mirror last night, I noticed my left eyeball was dropped down and looking to the left as I was looking straight. When I cover my right eye, it goes right back to the middle. But soon as I have both opened, it drops again. In a way, I'm hoping it could be a good sign of changes that could eventually help be more normal. But my eyeballs were straight before, I just had double vision and they didn't move together properly, like I couldn't look all the way left, etc.
But I wanted to thank everyone for the advice to go to the ER. It was a horrifying experience I hope I don't have to go through again and hope NONE of you have to experience. So next time, when I start to experience breathing issues, I am rushing right to the ER as quickly as possible.
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