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New diagnosis of Ehlers-Danlos
by UncleBunkles, Sep 01, 2009 06:37AM
This is my first post so please forgive me (tell me where this should be posted, or just delete the post) if any of this doesn't really go here.
I was recently diagnosed (1 month ago) with Ehlers-Danlos hyper-mobility type and they are in the process of seeing if I also have the vascular type due to my constant pneumothorax's and other symptoms. I have been having chest and joint pain ever since I was 10 (Maybe younger, I have a bad memory with things like that), I'd had 2 separate "Take-Home" EKG's, once when I was 10 or 11, the next when I was 13 or 14, each time they came back saying "We don't see anything that would cause pain". I was then referred to a chiropractor due to the fact I was always dislocating... everything, her diagnosis was "You're just very loosely put together, we should strengthen the muscles around your joints"
I tried my best but it hurt, bad, I had to quit my baseball team making up the excuse that "I don't like my coach" when in fact I was dislocating my shoulder and the pain was just getting worse, my father had become very good at "resetting" my shoulder for me, and couldn't pitch like I used to be able to, since then I had started pretending to my parents that I was getting better because I was scared they were going to find something seriously wrong with me at that point and that maybe I would grow out of it, a feeling which had stuck with me all the way up to the diagnosis of EDS, I had at that point been hiding symptoms from my doctors because of that fear (Yes, I realize its stupid but try going through what I went through). The diagnosis of EDS was still made regardless because of the apparent physical evidence and family history, they had originally thought I had Marfan after my most recent pneumothorax.
My question is: There are certain things I have come to understand and accept, I need to know what kind of reaction I will get if I "come clean" to my geneticist and primary care physician about hiding symptoms so I wouldn't be diagnosed with something because I was scared to death of the answer. an answer that I may never had if I hadn't been taken to the hospital due to the pneumothorax.
I was recently diagnosed (1 month ago) with Ehlers-Danlos hyper-mobility type and they are in the process of seeing if I also have the vascular type due to my constant pneumothorax's and other symptoms. I have been having chest and joint pain ever since I was 10 (Maybe younger, I have a bad memory with things like that), I'd had 2 separate "Take-Home" EKG's, once when I was 10 or 11, the next when I was 13 or 14, each time they came back saying "We don't see anything that would cause pain". I was then referred to a chiropractor due to the fact I was always dislocating... everything, her diagnosis was "You're just very loosely put together, we should strengthen the muscles around your joints"
I tried my best but it hurt, bad, I had to quit my baseball team making up the excuse that "I don't like my coach" when in fact I was dislocating my shoulder and the pain was just getting worse, my father had become very good at "resetting" my shoulder for me, and couldn't pitch like I used to be able to, since then I had started pretending to my parents that I was getting better because I was scared they were going to find something seriously wrong with me at that point and that maybe I would grow out of it, a feeling which had stuck with me all the way up to the diagnosis of EDS, I had at that point been hiding symptoms from my doctors because of that fear (Yes, I realize its stupid but try going through what I went through). The diagnosis of EDS was still made regardless because of the apparent physical evidence and family history, they had originally thought I had Marfan after my most recent pneumothorax.
My question is: There are certain things I have come to understand and accept, I need to know what kind of reaction I will get if I "come clean" to my geneticist and primary care physician about hiding symptoms so I wouldn't be diagnosed with something because I was scared to death of the answer. an answer that I may never had if I hadn't been taken to the hospital due to the pneumothorax.
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you though for your reply I was beginning to think no one was here.