Hi, i was referred to a neurologist when my CPK level came back high and was associated with muscle weakness, tiredness and aching legs. The neurologist then performed an EMI and concluded it was polymiositis. Most people have a muscle biopsy to confirm the diagnosis, but my doctor advised against it and said it was not necessary. I sometimes wish i had it done so i have no doubt that what i have is poly. The neuro has said that if it wasnt poly the meds wouldn't be working so i guess he knows what he is talking about.
I agree with you the fatigue is the pitts, and something others don't understand. It must be really frustrating not knowing exactly what you are dealing with. I really hope you find someone who is willing to listen to you and help you find out exactly what is going on.
Best of luck and take care.