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Palamino, and anyone else, has having gotten an official dx for EDS from a geneticist, besides having a dx, been of any help? What I mean is did it change anything or help anything in the long run?
My neuro tested me for the types of EDS that there are tests for and all were negative, but she thinks I have type 3 or maybe some yet unlabled subtype, yada yada. I saw a pedi genetic doc with my daughter who was a total jerk… my daughter he gave a 5 on the bieghton scale and me he wouldn’t even look at because I don’t have the typical widening scars of EDS. He also dismissed us because my siblings (all younger than me) don’t have any symptoms (that I know of, except a sister with scoliosis, and all of herse 4 kids can touch their nose with their tounges – an EDS sign) and my childrens symptoms have been vauge.
Since when we saw him two of my boys have had dislocations. The most recent was my 20 y.o. He was having arm pain and was at the chiroprator to get it looked at. The chiro was doing a very benign range of motion test on that arm and my sons shoulder completly dislocated. Chiro immediatly got it back in place and knew our family history of EDS, so though he was shocked that it happened so easily, he knew why it so easily happened. And this is one of my kids I would have guessed didn’t get the EDS gene.
I now believe because we homeschool and my kids have not been huge into sports is why we have not had more dislocations and symptoms od EDS.
All that to say with a dx from my neuro it helps us know what is going on and what to expect and watch out for, but it doesn’t do anything else for us. I would be willing to try another genetic doctor, but is there really any reason to? Can’t help but wonder if some geneticist would’t find studying our family interesting for research since we have 13 children…. to see how the gene is expressed in such a large group.