Natops- wow, you sound so much like me!!! I have had a pain in the butt - literally since this all started!!!! that is probably my weakest area, shoulders and well everything else, including face is a close second! I do have ptosis and at times swallowing difficulty too.. I Have dry eyes, dry mouth (it actually bleeds at times from things like brushing my teeth - ew!), but at the same time it isn't that dry, just my tongue is wierd I feel like.. metallic taste as well.. basically every single muscle is affected.. I was tested for POTS... they said technically I was negative as my BP didnt drop enough - however my heart rate sky rocketed to 150's when tilted and with forceful breaths .... all they could say was- "Strange" gee thanks! My pupils are also affected - sluggish and dilated more than norm, especially after concentrating on something up close for a bit.. I do almost pass out everytime I stand up..fun!
My emg's (many of them) are negative, but I have been getting IVIG for a year now (every 2 weeks).. it was absolutely AMAZING!!! the 1st treatment,, i thought was just placebo effect in my mind, thought I could do things I hadn't been able to do for months- I just wrote it off.. the 2nd IVIG was a miracle.. I was basicaly back to normal! Now my IVIG tends to wear off around day 10, and sometimes I make it to the full 2 week mark... I got my hands, swallowing and breathing, and well everything back to normal, and now it just fluctuates depending how bad I am pushing myself...
Good luck with the IVIG!!!! Let me know if you have any questions about it!