TB12,

There are also "non-dystrophic" neuromuscular conditions in which CPK is normal and EMGs may remain "normal" for years.

Keep tracking your symptoms and continue to present to your neurologists.
Your persistence is apt to pay off. Are any of your neurologists also specialists in neuromuscular medicine?

I had many symptoms for many years. This was complicated by co-occurring conditions. My neuromuscular diagnosis never became clear, despite years of repeated testing, until I was in a rather severe neuromuscular crisis in the ER and was seen while in crisis -- with overt and serious neuromuscular dysfunction, witnessed by a very bright intern in Neuromuscular medicine.

The many symptoms/signs I had noted over many years, which had been noted in my chart for all of those years, were read by this intern and had helped him to make a case to get me into the neuromuscular clinic for further evaluations.

Please keep good notes, just like the ones you have presented here. Continue to hand copies to your doctors.

If possible, seek second opinions, as well.

I also agree with Lara and Kiwi, also look into the possibility of Lyme Disease.

I hope we can support you in your finding your path to healing.

Warmly,
DejaVu