kapheen'
02-11-2004, 10:05 AM
I'm curious about how a doctor goes about diagnosing someone with Osteogenesis Imperfecta?
I'm 26yrs old and have recently (the past 16-17 months) been having problems with my ears. I was diagnosed with Otosclerosis.
After reading that people suffering from Osteogenesis Imperfecta have hearing problems in there early 20's-30's and since I've had so many breaks/fractures I put two and two together.
I've had around 20-25 breaks/fractures, And a few dis-locations. And ALL of them seemed to happen very easily.
Thoughts/Input appreciated, Thanks in advance.
zekat
02-12-2004, 04:35 PM
Diagnosis can take some time. First I believe you need to get a bone density test done -- a doctor can tell a lot from the bone denisty. Osteo Penia can be diagnosed from a bone density test and your doctor would have good reason to have you tested to Osteo Imperfecta if you got a diagnosis of Osteo Penia ( as far as I know, the Osteo Penia is not a disease, but more a symptom of a disease) -- You can't just get an Osteo Imperfecta test anywhere -- your doctor would most likely have to refer you to a hospital for testing
HOpe this helps -- I have very limited knowledge, but thought I'd write you since there were no responses yet.
kapheen'
02-13-2004, 02:38 AM
I do appreciate the reply, Thanks.
As soon as my medical insurance is kicked back into gear I think I'll get a referral to have it tested for.
Anything else anyone can offer is appreciated also.
Thanks.
earthmom
02-14-2004, 07:55 PM
another way to tell is, do the whites of your eyes have a blueish tinge. my son and ex both have it, My son is not so bad, but the ex is. He has had several breaks, and the whites of his eyes, have a blueish tinge to them. My son was first diagnosed by medical history and they looked at his eyes. I don't know if this will help and I don't know much about it. just what my ex has gone through. My son they really are not to concerned.
kapheen'
02-15-2004, 01:56 AM
Actually, The whites of my eyes do have a faint grayish/blueish tint to them. Thats another reason that I'm leaning to wards this disorder.
Also, Low muscle mass is a symptom. And I am very low on the muscle mass. I was very active for most of my life, Up until I hit about 22-23. After that I've worked out and done exercises randomly for the past few years. And never, Ever built up much muscle at all. A lot of my joints pop and feel weird too.
I don't know, If I could give myself a self-diagnosis I would. But, None the less, I have to wait for my insurance to be reinstated so that I can actually get tests done. Maybe all they will have to do is look at my medical history and my eyes to be able to determine whether or not this is my situation.
Thanks for the reply, Any more are apreciated.
lilbit
04-15-2004, 06:49 AM
up until i was at least 2 years old, i constantly would break bones and bruise very easily. finally when i was 2 i rolled off a mattress in my grandmother's house and broke my arm and my parents rushed me to the ER. Two days later, a social worker came to my parents' front door and tried to take me away from them--accusing them of child abuse. but each time i had broken something or bruised something, the act had been witnessed by at least one other person...anyway, my doctor finally figured it out, by looking at the sclera....ever since then, i have had many more multiple injuries and broken bones. my doctor told my mother that as i went thru puberty my bones would get stronger, but to always keep me on calcium supplements b/c as i got older, my bones would weaken. it freaks people out when they notice that my eyes have a "blueish tint" to them!! :)
anyway, my answer to your post (sorry to highjack your thread) was to say that I had never heard of people "developing" OI...
are people born with such mild cases that they just aren't diagnosed until later in life???
i would say that if you have the blue tint to your sclera then it is most likely OI, esp if you are experiencing multiple injuries and bruising.
good luck with it, and all i can say is "remember to take your calcium"
lmpollack
07-24-2008, 02:04 PM
I was wondering from everyone if when they were babies if they were longer babies or shorter babies, we are very concerned that my baby might have osteogenesis imperfecta. they claimed they checked for it at the hospital but they were just looking at physical features. and sometimes they cannot diagnose it for months. She has a definate blue tint to her eyes though.