Osteogenesis Imperfecta....... - Bone Disorders Message Board

kapheen' · 02-11-2004, 08:05 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, 02:35 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, 12:38 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, 05:55 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' · 02-14-2004, 11:56 PM

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.