Discussions By Condition: I cannot get a diagnosis.

16 years of agony no diagnosis please help...

Posted In: I cannot get a diagnosis. 28 Replies
  • Posted By: klaritydawn
  • April 7, 2010
  • 07:36 AM

Hello everyone!
This is in regards to my beautiful daughter who's suffered the same thing since she was 3 yrs old maybe before that. Severe knee pain began in her right knee and later it was in her left knee as well. The pain radiates down her legs into her feet and up into her hips. She often has to walk with a cane and sometimes a walker. She falls mostly because the pain is so excruciating she just can't stand on her legs and she falls.
Changes in the last 5yrs I'd say are they are swelling, often very red and hot but the redness goes way above and below her knees and it seems to wrap all the way around her legs. She was an extremely active little girl, soccer, dance, dirt bikes, tree climbing mostly a little tomboy. No matter what she did though every single night when her legs came to rest the pain began, we used otc rubs, ibuprofen, tylenol etc. to no avail! She's had no injury that we can remember other than when she was about three she was on one of her riding toys that you just push with your legs...she accidentally drove it down about 8 stairs. She had injuries but her little face got the bulk of it and while in the ER that is what they focused on.
She's had mri's, xrays, seen ortho. surgeons, Neurologist, and a whole host of doctors...NEVER do we get an answer. She does have several other diagnosed health issues as well. Kidney disease: they are calcifying and she's passed around 50 stones with one retrieval. Endometriosis: already had surgery to remove what they could and now because none of the birth control worked she is taking shots to throw her into pseudo menopause to try and stop anymore of it, cancers, and pray she will be able to have children one day. Recently her vit. B12 was 178, vitamin D extremely low too, and she gets severe recurrent cankers sores on her tongue, throat, side mouth and inside of lips and multiple. So much more but I've overwhelmed you already.
We are getting most things treated but the knee pain keeps her chained to her bed for the most part. She's been home schooled all of her high school career and now her first year of college she is taking on line and desperately wants to get on campus next year!
No arthritis... I have Systemic Lupus but she doesn't so far.
We are beyond tired and beyond desperate for help.....anyone please??? I just don't understand how this could go on for this many years and no answer. oh and Yes she is on heavy narcotics and several other medications as well and this is no way to grow up.
God bless all of you who are here suffering or her because someone you love is in agony. May God bless and keep each of you.
Thanks so much!

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