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

Ever since last year when I was first diagnosed with MG my voice too had been greatly affected. Every single day I have speech problems, there are times when I try to speak it takes my breath away. It sounds nasal, then it's muffled, then its both. I try to talk slower, to get my words sounding right but I know from experience that this is vary hard to deal with. I almost always need someone to talk for me when I need to call anyone. Its hard but my thought is, there is always tomorrow.