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Date of last update: 10/04/2017.

Forum Name: Neurology Topics

Question: Typical fibrous dysplasia symptoms or something else?

 design_grrl - Sun Mar 02, 2008 2:01 am


I am a 36 y/o female. 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, morning nausea/sickness, 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), chronic swelling inflammation, intense tenderness of a small section of my lower back (the lightest pressure, even clothing, causes pain.]

Thanks for your help and feedback!
 John Kenyon, CNA - Wed Aug 13, 2008 11:01 pm

User avatar Hello -

I believe I addressed a similar post (at least involving the same complaints) from you in a different thread. All I can add here is that I can't find much, if anything, in the literature, which would suggest fibrous dysplasia as an explanation for your myriad symptoms. I offered some suggestions in my reply to your other post, and hope by now you've learned more and are having your problems managed. Oh, and what I infer from your post here, your endocrinologist was merely making a guess with "possibly...fibrous dysplasia" and so since you weren't actually diagnosed you haven't been misdiagnosed. However, it would seem the guess at this possibility is a huge stretch.

Please check my reply to your other post, even though there are issues mentioned in this one which didn't appear in the other one. Best of luck to you and I hope you'll follow up with us here.

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