Hi Lab-Scientist-Lady! I love your name by the way. 🙂
Thank you so much for your response. I have an appointment with a geneticist in November. I am really hoping I can get some answers or at least some good info to work with. I’ve always had to handle things on my own and had a terrible appointment with a neurologist back in January so I am rather nervous about my upcoming appointments. I am dreading the possibility of more doctor unpleasantness but I know very well that doctor unpleasantness is a common occurrence for EDSers. Fingers crossed these appointments of mine won’t be too bad. The first doctor I am seeing is a gastroenterologist in about two weeks and then a neurologist a couple weeks after that and the geneticist in November. I’ve never been to a gastro or geneticist before (and my only experience with a neuro was a nightmare followed by 3 others who refused to even meet with me), all of this EDS stuff is new to me, and I have pages and pages of symptoms (not to mention all of the new stuff that pops up as well as all of the things that I am still learning are actually symptoms) so it’s a bit overwhelming to figure it all out. What’s worse is that my brain has apparently decided to take a leave of absence and has been waaaaay more foggy than it ever has been before. I feel like I’m losing my mind and can’t function at even half the level I did just a few months ago. It’s amazing to find all of you lovely folks. I have never known or heard of anyone else who experienced the same things as me so it is still strange to not only find out that there are others out there who are like me but that there is also actual conditions and names for all of these experiences. Suck it, everyone who called me a hypochondriac and treated me like an idiot! Booyah!