I'm trying to assist my sister-in-law (53 yrs old) with her medical problem. She recently engaged with dr to assess pain in her shoulder/neck. The pain has began to impede her daily life in November. She got an appt with neurologist and he prescribed pain killers and muscle relaxants--they were of little use. she reengaged with the dr's office after 3 wks and told them the symptoms were getting worse, but they insisted she wait until her appt in 2 wks. she became proactive with her treatment and insisted on a muscle biopsy. reluctantly, her neurologist set up the procedure a month ago. results indicate she may have desminmyopathy. needless to say, they are not impressed with their present dr and would like to find a different one in the Wisconsin area. however, they are not sure who to turn to. they have done extensive research on the web, but find very little info for this disease. i know this is not a medical condition request but we would sincerely appreciate any resource you can pass on to us. Many thanks!!