Hello, and thanks. I have had a very persistant dull non-specific headache (basically feels like it just sits in the center of my head and extends to my forehead), confusion and intense vertigo since about May of this year,no diagnosis yet.
My symptoms seem to get worse as the day wears on, and best when I first wake up. I think this may be due partially to the fact that I deal with it better when I'm well rested.
The dizziness specialist I saw said it sounds most like CNS vertigo rather than related to my ears but he didn't explain much farther...he just gave me a sheet of exercises to perform to "train my brain" to not be dizzy. This still doesn't adress my constant headache and confusion. Seems to fuel the vertigo: is if I cut my eyes sharply in one direction and look back strait the room will be waving around like I am on a ship on a rough sea.
I have had the following tests: SPECT of head. MRI brain, MRA brain, MRI c-spine, MRA neck. CT brain. Chest X-ray. Arterial blood gas. Apx. 25 blood tests including ANA, lupus, lyme, HIV, and so on. All tests are negative EXCEPT for an "incidental finding" which is a (to paraphrase) "3 cm extra-axial lesion adjacent and above the left orbit with some evidence of brain compression", which none of the 3 doctors I see think this is the root cause. "Likely fibrous dysplasia"
QUESTION ON MY MIND IS...I HAVE BEEN SCANED FROM THE NECK UP..BUT is there something that may not have been picked up on blood tests, that could cause me to feel this way? (thorcic, adrenal, heart, distant artery/nerve compromise, blood pressure??
As a final thought, is it a possibility that my doctors are hesitant to say the "fibrous dysplasia lesion" is causing my symptoms because they are afraid that if they do surgery and I don't improve that I will be angry, and that they are waiting on me to insist on surgery? Please tell me honestly if my thinking is screwed up here, because I am desperately searching for an answer to my symptoms with no luck. I just don't know where to turn to anymore, I have passed the point of desperation.
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