Hi Nicky,
I'm sorry you are feeling so rubbish during the summer. It doesn't seem fair! I wanted to agree with Annie (as usual). When I started my pred it took about 5 weeks to help me and for the first 4 I felt worse than before! My neuro was so worried about how long it was taking to be effective that he sent me in for a round of Ivig. At the time I didn't think the IVIG helped because I still felt terrible for about a week but after that I was nearly "normal".

If you do have viral or other infections they could be making things worse too - I always feel completely wiped when ill.

In terms of your tongue - mine has never been affected to the degree you describe. Since it seems to be something at night that is causing the weakness could you maybe try a BreatheRight strip (it'll open up your nasal passages and maybe reduce stress on your mouth) and a bite tray (to add some space in your mouth so you aren't pushing your tongue too hard against the sides). I don't know - these are just some ideas.

Take care!
Kathy