wildcat- have you looked into isaacs syndrome?? I also had very similar symptoms as you, especially in the begninning.. numbness/tingling, and then I felt like my muscles were just doing this constant "thing" i can't even describe it.. i told my husband almost 2 years ago now.. that it felt like what tetnus would feel like.. like fingernails on a chalkboard, but inside my muscles at all times.. even while I slept.. I felt like I would wake up feeling like I was beat to death! I Have had bulbar and respiratory signs and well every other sign too!
Anyhow.. Isaacs or neuromyotonia can cause a lot of these symptoms... My needle emg is always negative.. but i still have these symptoms, just not as bad at all with ivig now..