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Well, my referral was approved and now I have an appointment for

Thursday afternoon with the rheumatologist. Keep your fingers

crossed for me that he is knowledgeable about HEDS and is willing to

make a diagnosis. I am confident that, at the very least, I can get

a diagnosis of HMS.

My biggest concern at this time is that I'm having trouble collecting

family history information... I can't ask either of my grandmothers

about medical issues becuause they will worry themselves sick

(literaly), my sister (whom I don't particularly get along with,

never has) thinks I'm just being a total hypochondriac (especially

since she doesn't have hypermobile tendencies... she's also

dislocated her kneecap but only once or twice, had bursitis in her

hip in high school, but that is all I can remember about her health

history and she won't share anything else. She only scored a 1 on

the Beighton scale.), and while my parents agree that I seem to fit

the profile of HEDS and that it explains a lot of stuff in my medical

history, they seem hesitant to examine their own medical histories to

see if they've had characteristics.

Wish me luck!

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Best of Luck . Not every one can get family history. just remember about

the folks that have been adopted. They can get their DX with out knowing. So

relax, and work with what you have. CindyLouWho

Fingers Crossed

Well, my referral was approved and now I have an appointment for

Thursday afternoon with the rheumatologist. Keep your fingers

crossed for me that he is knowledgeable about HEDS and is willing to

make a diagnosis. I am confident that, at the very least, I can get

a diagnosis of HMS.

My biggest concern at this time is that I'm having trouble collecting

family history information... I can't ask either of my grandmothers

about medical issues becuause they will worry themselves sick

(literaly), my sister (whom I don't particularly get along with,

never has) thinks I'm just being a total hypochondriac (especially

since she doesn't have hypermobile tendencies... she's also

dislocated her kneecap but only once or twice, had bursitis in her

hip in high school, but that is all I can remember about her health

history and she won't share anything else. She only scored a 1 on

the Beighton scale.), and while my parents agree that I seem to fit

the profile of HEDS and that it explains a lot of stuff in my medical

history, they seem hesitant to examine their own medical histories to

see if they've had characteristics.

Wish me luck!

To learn more about EDS, visit our website: http://www.ceda.ca

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