I just love to choke myself awake….NOT! When I wake up like that, my tongue seems to be taking up every available space in my mouth.

The longer this goes on, the more I am figuring things out. My tongue is causing even more of my troubles than I could have imagined.

I got up and took pictures of my tongue. Once I sat in my comfy chair, the distress shifted from the part of tongue in my mouth, to the part in my throat.

This stuff feels life threatening. It cuts off my air. I choke on saliva because my tongue doesn’t work right. I don’t know if my tongue is pushing on something or it’s just the weakness, but the pain in my neck/throat is from what my tongue is doing. Now that I did all that moving around of my tongue, the fasciculations are starting deep in my throat, making it even harder to breathe and swallow. Geeze, this is scary.

It’s blatantly obvious the real problem is myasthenia gravis. The weaker my tongue gets, the more my eyelids droop. I soooooo don’t understand why I am not getting IVIg to make it better. The death rate for untreated MG is fairly high.

The disability lawyer has taken my information and documents. I wonder if this is one of those places where a committee has to convene and vote on what battles they are going to fight? I fervently hope they will kick some butt for me.

I forget now when I woke up. 4 or 5? I went back to bed after 6 AM and woke up after noon. The sudden cramping around the bottom of my lungs…probably my diaphragm, scares the beejeepers out of me. It feels like it knocks the air out of me, then paralyzes my breathing for a few seconds. My muscles are twitching EVERYWHERE! It all makes my head hurt soooo bad! My eyes see wicked bad double and blurry. I don’t want to know…but really, how much weaker can I get? When I see the doc on Wednesday will it make any difference?


Even somebody who knows relatively nothing about MG can tell I have it. I don’t understand how my insurance can continue to deny me treatment.


Label me frustrated.