I've been getting worse over the last few months, due to the neccessarily reducing of prednisone. Though the last 3 weeks it seemed to stick to "severe, but survivable". I've always been very bulbar, but now I can't talk at all. At first, I had times I couldn't talk, or times where I was nasal and sounded drunk. But now, it's fulltime for a few days now.

I don't know what I want to reach with this post...but I just feel off. I never thought this could be só awful, not being able to make sounds or whatever. I feel kind of trapped in my head so to speak. I can type on a light iPad, but still I have this urge to talk or just make sounds or whatever.

Have you've ever experienced this?

It's time to dial 911. When you "can't" do something, you need help in an ER. Period.

When muscles get to the point of not being able to do something, it's actually past time to seek out help. PLEASE, just dial 911. And write down a simple note as to why you can't talk, your neuro's name/# and that you have MG!!!

Now, just GO! I hope you'll be okay!


Annie

Sorry, didn't mean to make you worried!
Well, I'm in and out hospital anyway, they think there "must be something else" going on,
I already am on liquid food (through the nose) because of my mounth being so, well, weak.
They want to keep me in the hospital, but as long as I'm able to breath, I won't stay over night ( I really, really hate being in the hospital, and I simply can't be that long without my animals. It seems ******* I know, but that's just me. I loathe being there...)

But docs and I agreed that if other stuff won't work within a short time, or I get even worse, I seem to have no choice but to go back on the prednisone (and all kinds of crap with it).

I have a lovely family who keep an eye on me, so it's "safe" to be home.

I'm going to the hospital tomorrow again, it's just that this not being able to communicate the way I want, the way that's normal, really bums me out. It feel weird.

I know the feeling. Seems like when I couldn't talk, that is when I wanted to talk the most. And when I was too weak to talk, typing or writing were not working either. It is very frustrating to not be able to communicate.

I"m so sorry to hear this.. how anxiety provoking that must be... I had a few hours once where I couldn;t really get sound out - it was like my throat would collapse in on itself.. and literally no voice would come out.. and if it did, it sounded like a frog.. as it was trying to get around this collapsed throat.. I couldn't swallow during that time either.. I basically went without eating or drinking for a few days until it was IVIG time.. it was scary, so I can only imagine what you are feeling..

Are you on any treatments?? I can't remember- are you seronegative? what was the reason for them reducing your prednisone? Did that seem to control things?? could they give you a loading dose of IVIG? is your breathing and everything else ok? As limpy said.. when I was at my worst, my fingers and everything were just "floppy".. I felt very anxious about taking care of myself, much less my kids and family... thinking about you, and sending you get well thoughts your way!

Yeah, it just kind of freaks me out sometimes, because it doesn't only feel bad physically, but mentally too.
I do have overall weakness, but my bulbar symptoms are the worst. My legs (or hips I don't know) are very weak too; I'm in bed or wheelchair most of the time.
Breathing is also way to difficult, but I do not need fulltime respiratory support.

My eyes are very good, I have the mildest ptosis ever. It's from the nose down I guess.

Yeah, I take cellcept, MTX, prednisone, mestinon of course and I started plasmachanges or whatever they're called. Prednisone is the only thing that seems to work, but the side effects will kill me ( I got a steroid psychosis end of 2012), so I can't higher the dosage unless we'll start the medicine to take care of that (they really want to start a cocktail of statines, lithium, insulin, and all kinds of scary stuff). I still haven't given the green light for this because I'm concerned this will just be the start of a downward spiral - At least now I still have myself, my intelligence, my memory.
I am sero positive by the way.

wow... yea I would want to avoid them if that happened too, but man to not be able to talk either.. neither of those are easy situations.. Have you tried IVIG? could they do a loading dose of it as well?

I hope that they can figure out something that will work well, and work quickly.. My heart really goes out to you!

I'm so sorry you are going through this. Does the plasma exchange help? How often do you get it? Do you get it regularly? If you do I know that trumps IVIG. Do you have breathing support at home, such as a laptop vent or BiPap? It sounds like you are really in a tough place, I'll say prayers for you. Please keep us posted.

An update: I'm able to make sounds again. Not really talking, no one can understand what I'm saying, but I can squeak and grunt and make sounds hehe. My mounth (tongue I guess?) is better, but my diaphragm is weaker, so yeah: I use respiratory support now.

I still haven't made up my mind about treatment, but for now I just try this, see how it works out: maybe things will get a bit better just over time, because that sometimes happens with mg.

I'm glad you're somewhat better but it doesn't sound like your MG is stable. You seem to have a good neuro, just keep him in the loop. It also might be a good idea to have a consult with your primary doctor to make sure nothing else is making MG worse.

Annie