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fibrous dysplasia unrelated symptoms?

by design_girl, Mar 02, 2008 12:15AM
Hello.

I am a 36 y/o female with a history of endometriosis (complete hysterectomy at 28 y/o), adhesions, and possible IgA nephropathy (long history of proteinuria, hematuria, abdominal/flank pain).

Approximately 3 years ago, I had a stroke-like episode with sharp head pain and temporary facial paralysis. Because I had a previous history of blackouts and migraines, I was sent for an MRI. The MRI showed "abnormal skull thickening." I was then sent for a bone scan which revealed "hotspots" on the skull.  The lesions were contained in the skull area and I did not (and do not) have obvious deformation. My primary care physician suspected Paget's Disease and sent me to an endocrinologist. After many endocrine-related tests I was found to not have an endocrine disorder/disease. The endocrinologist was baffled and told me I possibly had fibrous dysplasia.

Approximately 8 months later I was having increased head pain and some vertigo so I returned to my endocrinologist. I was sent for another MRI which revealed no change in the skull. Because of this, she didn't seem concerned and did no follow-up tests.

Over the past three years, I have had increasing depression (which I never had before the "stroke-like episode"), nightly insomnia, and have frequent dizzy spells (which cause me to fall at times). I have also noticed a severe decrease in my hearing ability. I have done some online research on fibrous dysplasia and have not connected any of my symptoms (other than maybe the hearing loss) to this disease. Could my symptoms be caused by fibrous dysplasia or could I have been misdiagnosed?

[Some (possibly) unrelated symptoms I have are: bruising very easily, bleeding episodes (where I bleed from my nose, gums, throat (tonsils when I had them), ears), and chronic swelling inflammation.]

Thanks for your help and feedback!
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