I appreciate the response, Kiwi!!!! Today I faxed my medical records to Dr. Levine who is one of the collaborators in the study you referred to me to read. I do reside close to him(a state next door) ;consequently, when it was suggested by someone at Washington University Neuromuscular Clinic to contact him, I thought about it. That was two years ago and since my symptoms have changed I am finally pursuing some answers. I am only hoping he will consider taking me as a patient.

Sounds as if some of the people participating in this thread are in this study group. Thanks again! N