Gosh this forum, goes for days without any new topics and then we all have something to say LOL!

Im having a bit of a rough time of it at the moment, still waiting for my referral to London etc.

My question is does anyone else get like this .......

At the moment I am severely limited to what I can do. Mainly I can sit (but have problems supporting my neck) or lie down. I can walk but this is limited to around the house and no more than 4 trips up and down the stairs in a day. I can shower and dress, but this has to be paced with rests. But a shower at the moment is enough to bring on bilateral Ptosis.

If I go above this level of "activity" I crash. My heart rate goes into the 140's, my breathing feels laboured and I end up on oxygen. My oxygen sats, may or may not go down. When the crash happens I end up not really being able to move much, talk, everything seems very heavy. I end up shovelling more mestinon down and pray that it kicks in, which it usually does after 30-40mins. After around 1.5 hours I can resume my normal "activity" levels.

My parents were here at the weekend and it happened whilst they were here. My dad said it was almost like watching my body shut down. To be completely honest thats exactly how it felt.

Ive got to the point now where I am avoiding doing anything, as I dont want to end up in the hospital. My quality of life is really being affected.

Does anyone else suffer with such episodes?

Any replies gratefully recieved

Love
Rach