Frustrated with the American Healthcare System

Well they said EVERYTHING fine AGAIN BUT HAVING a migraine nd lite dizziness. A day after my colonoscopy.

my geneticist had me get a connective tissue panel and it came up with four different unknown significance gene mutations and they didn’t even tell us what that meant! I was kind of annoyed with it. It had a vEDS variant and a spondylodysplastic one, a stickler and a hardikar variant. All are unknown significance but they didnt even say if that meant we should test our family members. Mind you, I am 17 and this was through a Childrens Hospital geneticist and they kind of shrugged off my symptoms as “Hypermobility Syndrome Disorder” even after my genetic testing.

Yes just mad cause I cant eat on the 4th of july😂😂😂

Sheesh I need you to look at my medical file Because like you say bloodwork dont always tell. And that what Temple hospital keeps doing to me. I have lower back pains beey bad back in March I was told it anxiety Mow here we are in JuNe same problem just my upper cheat and back area hurts. No coughing, no mucus. Just hurt as if I. Over working my muscles l. And just want answers. So now July 5th I have a colonoscopy scheduled. And I'm PETRIFIED....

Also, if you're finding defects in collagen genes, it's pretty likely you have eds. Science hasn't found the exact genes for hypermobile eds yet but you can be dxed using the beighton scale. Also, eds affects all body systems so if you are having GI, neuro, etc issues, list them as symptoms when you take your list to a doc.

Where are you located, just a general city/state. I have eds and am part of several groups, I might be able to help you find docs.

Are you able to get an appointment with a rheumatologist? I have ehlers danlos syndrome and my rheumatologist partnered me with a physical therapist that specializes in isometric PT. I was fine as a kid and young adult because I was extremely athletic. After a work injury made it difficult to maintain my physical fitness I started to get a lot of joint pain. My muscles simply didn’t keep up with my joint flexibility.

Have you talked to your doctor about ehrlers danlos syndrome? I'm in the process with my doctors to check for it. It's genetic hyper mobility disorder with different variations and levels of severity. A physical therapist recommended talking to my doctor about it after my shoulder dislocated and my previous history of dislocations.