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I to was diagnosed with idiopathic benign intercranial hypertension by having bilateral optic neuritis and a high opening pressure for lumbar puncture. I was hospitalized for 9 days with multiple tests, imaging, and lab work. I had every symptom in the book for ms, even not being able to walk. This was back in Oct. 2006. I went to different drs from rheumatologist, endocrinologist, neurologists, cardiologist, vein specialists, neurologist, etc. I even had psychological testing done to see if it was mental related. I had drs believe it was all in my head, that I was crazy or had conversion disorder. It was more depressing than you can imagine. It caused marital problems, lost friends, and even my own family thought I was all due to stress. I ended up having such severe tremors I could not function and one neurologist informed me in a nasty tone when I asked him to help me cuz I could not live this way with trying to take care of a 3 yr old and 6 yr old with a angry husband that works 60 plus hrs a week that "I dont have a magic pill to help you, I think you need counseling that this is a mental issue." needless to say I never saw him again and left his office in worse shape due to crying and being so extremely upset. I ended up seeing a different neuro who has followed me through everything since April 2007 with IBIH also called pseudo tumor cerebri. He has been watching for possible ms which could take years for brain lesions to occur, and has diagnosed my symptoms that are just like ms with left sided facial droop during attacks (it is not bells palsy) and to weak to walk, severe speech slurring, no thought process right sided severe weakness etc with complex migraines or some call it complicated migraines. Most of the time I have no head pain or actual migraine which made it complicated to diagnose with no head pain. It wasn't until last year after dealing with this for over 4 yrs that I actually started having excruciating migraines in temple above eye and sometimes behind the eye. With complex migraines which is what yours sounds like you can have no actual migraine but severe and very debilitating neurological symptoms which are very scary. I personally own a walker, cane and wheelchair for when my attach is severe. It is NOT in your head and you are NOT crazy, so do not let people tell you that you are. Always stand up for yourself and you are your best advocate. If you feel in your heart something is wrong or not right, get it checked out and go to what ever doctors you have to, to get your answer that you feel is correct and fits. Not all drs are aware of every condition, and not all drs will work with you to find your answer. Best of luck and prayers for answers, cures, and hope. BELIEVE IN YOURSELF!
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