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I need HELP no doctor has been able to help they just push the pills that do not work at all they just mess up my head. I live in Reno Nv and need to be diagnosed. My grandma was the first known cause of elders danlos many years ago in Ohio. My 23 year old daughter is suffering with this too. Please offer me some guidance
Replies to "I need HELP no doctor has been able to help they just push the pills that..."
Hi Josh, I am in the same boat. Getting a proper diagnosis is very challenging, especially if have hEDS vs the ones that can be identified genetically. In Jacksonville, FL they have more Drs familiar with it. I haven't been able to get a proper diagnosis for it. That's why we are called Zebra. Drs are taught that if they hear hoofbeats then think horse. They forget about the zebras. Unfortunately, because I am young and "look healthy", then I suffer in silence. My quality of life has greatly diminished and it's a challenge to keep going. I hope the best for you and your daughter. EDS is truly awful.
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Welcome @josh42, I'm sorry to hear that your doctors don't seem to be listening to you. You mentioned that both your grandmother and your daughter have been diagnosed with Ehlers Danlos Syndrome (EDS).
There is a discussion on EDS where you can learn what others have shared and might find helpful:
--- Ehlers Danlos Syndrome - Who is the best doctor to see?: https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-new-diagnosis-1/
Do you think you might also have EDS?