I was DX May 11, 2006, but had symptoms for 2 years before finally got the DX. Tests were mri, blood work (which showed elevated cpk,3000), emg, ncs, etc, finally a biopsy of muscle tissue.
The spasms came first and gp sent me to a Neurologist right away. After a year of the spasms begain to show significant muscle loss. Loss of ability to walk and keep balance. I have limb onset. It began in my feet, now has moved all the way to my neck after about 3 years.
God Bless
Capt AL