I have known I had this for about 24 hours now, but have only had phone contact with a doctor. My own fleet of doctors have no knowledge of Ehlers-Danlos, so I hunted down a geneticist in my area who spent an hour on the phone with me and will see me next week. After the initial glee at recognizing myself in the signs and symptoms list (to utterly an amazing degree, I admit) I walked , or rather laid, around grinning like a fool who had just hit the trifecta. Now that the thrill has died down, I am wondering if just knowing what it is will really lead to any improvement in my painful parathesias, or help with my prosthetic hip repeatedly subluxing, or stop my agonizing headaches, etc., etc. Czn anyone share any stories of actually getting some help aside from the admittedly great feeling of validation that I am not crazy, at least not about this.
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