Gail
Many would say see a geneticist, but it depends on how knowledgable he/she is. Consider seing a rheumatologist, or a connective tissue specialist. You need to find a specialist who has some knowledge of EDS, and other connective tissue disorders. I don't know where you are, but here in the U.K. the questions are still the same. It's hard to find the specialist who can look into this for you. Wishing you all the best in getting a diagnosis, Gail