I can’t thank you enough for your input, PalominoMorgan! That is exactly what I have needed. And that has been the problem when seeing other docs, like when I saw my new ophthalmologist and neurologist. Without having a confirmed dx, they give you the “look” if you suggest the possibility of something such as EDS. She has mentioned sending me to a rheumatologist. I’m thinking if I can get EDS dx’d, I would be in a better position to suggest a cardiologist for possible dysautonomia.
So, then, one more question, if you don’t mind, what doc would dx EDS, or would it be my pcp? Thank you again so much
Oh yes. The look. You are with sympathetic docs if all you are getting is the look. When you get the arrogant ones or they get tired of you they flat out tell you “not to get so worked about these things”, “you seem VERY aware of your body”, and the one that drives DrD and I absolutely nuts… “you’re fine.”. I hate that one so much I have a t-shirt design I just need to put to paper. Proceeds to benefit my service dog fund since I’m so “fine”. DrD refers to those lovely physicians as Doc-Tards. You will learn to be a professional patient. Ou are the captain of you medical team. If somebody doesn’t want to be on the team, fire em. Doesn’t matter how big a hot shot they are. If they aren’t working for you, they re working against you.
Now, as for an EDS diagnosis. It can come from any doctor really in theory but to be definitive you will want it to come from an EDS knowledgable geneticist. There are recommended doctors scattered around the country. If you are willing to tell me what state or part of the country you are in I could make some suggestions. If you can afford a plane ticket your best bet is traveling to Baltimore to see Dr Clair Francomano. She is THE EDS expert in our country and sees patients of all ages. In all my time and research I have never heard a single bad word about her. Extraordinary really. I nave seen her myself too and love her. Of course if travel is not an option there are other very good EDS docs around the country too. Knowing where you are or where you could get to would help in making suggestions.