Aa
New diagnosis of Ehlers-Danlos
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.
*knock knock* Anyone home?
Oh well... Though, I do think its cute you guys call this a "Community".
Oh I am sorry I am a visitor here we do have a good community I think you just clicked onto the wrong forum go back to the forums page and take a look at the 'Menu' I am uncertain which one but I will also check it out and send you a note ,Good Luck
I have just spotted that it does say that Ehlers is on this forum, well I wonder if you check the expert/Doctor forums on the right , of the forums page .
SUCCESS it does have an expert genetics forum, so go to the forums page and click on the right on genetics .
That is actually where this post was made. Thank
you though for your reply I was beginning to think no one was here.
you though for your reply I was beginning to think no one was here.
HELLO UncleBunkles,
I read your message and I have a question for you.
Doctors suspect me of this syndrome (view my post http://www.medhelp.org/posts/Genetics/genetically-deficient-collagen/show/1037573)
but in my country are not testing for a clear diagnosis of the disease (I live in Romania (Europe)
please tell me what investigations, analysis you did to establish this diagnosis
thanks
I read your message and I have a question for you.
Doctors suspect me of this syndrome (view my post http://www.medhelp.org/posts/Genetics/genetically-deficient-collagen/show/1037573)
but in my country are not testing for a clear diagnosis of the disease (I live in Romania (Europe)
please tell me what investigations, analysis you did to establish this diagnosis
thanks
im 17 and i was diagnosed about a month ago too. lol. im going to a genetists to finalize and to see if it is for sure just the hypermobile type, have suspissions that it might be more, hope not though.. anyways, always be completly truthful with your doc even if you think it have nothing to do with your condition, because it might.. example i am awful at using scissors and have also had speech problems. symptom on eds.
so my advice is, bare your soul, tell them everything, it will help you in the long run.
good luck
so my advice is, bare your soul, tell them everything, it will help you in the long run.
good luck
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