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Multiple broken bones! unknown disorder! Help!

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Old 12-22-2011, 04:57 AM   #1
Join Date: Dec 2011
Location: Baltimore
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aisha918 HB User
Unhappy Multiple broken bones! unknown disorder! Help!

I'm a nineteen year old girl, who is 108 pounds and I live an extremely unactive lifestyle. I have always had horrible coordination and balance. I learned how to walk on my tip toes instead of the way everyone else does. I broke my first bone when I was four, and had my latest episode six months ago.

I have broken my arm once, I broke my left ankle three time, my right ankle twice. I broke my feet five times. I broke my toes three times. I have sprained by ankle twice. I have had two concussion.

I have also had painful swelling of the knees ten times, experiencing fluid underneath the knees called 'runners knees.' However, I have never played a sport, ran, or even carried anything heavy before. I also have hypermobility of my joints, which basically means Im double jointed. Really really double jointed.

Throw in the fact that I have a reoccuring low grade fever. Most doctors just scratch their heads and throw me to the next specialist.

So, what do you think it is? I've looked through a few dozen bone, autoimmune, and genetic disorders that I could find, but I've hit a wall. I have a doctors appointment with a geneticist in two months, but I'm trying not to put too much hope in it.

So, Help? Pretty please?

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Old 12-22-2011, 09:22 AM   #2
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Re: Multiple broken bones! unknown disorder! Help!

Many of these disorders are genetic in that you were born this way. So the type of doc you need to see is a geneticist. They can test you for all sorts of genetic disorders and see if you have one. Most docs are never trained on these disorders. I know "toe walking" is often genetic. Comes from an Achilles tendon that is so tight you can't put down the entire foot. And I would assume that bone density problems would come with something like that.

So please ask one of your docs to help you find a genetic counselor(that is what they are called) and most are at hospitals and associated with children's problems or newborns...people want to be tested to see if they are passing anything along to their children. So look for one at a hospital....preferably a big hospital associated with a university medical school.

Good luck and I hope they find out what it is.


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