I was just diagnosed with trigeminal neuralgia after several painful days of unbearable facial pain. Although I had all the standard symptoms of trigeminal neuralgia my pain seemed to last much longer than the less than 2 minute epidoes as described in medical text. The night I went to the ER it had been going on for over an hour. I also have NF1 but have never had a MRI or CAT scan. After going to the ER I was referred to neurologist. I called today and they (neurologist) can't get me in for several weeks. I'm concerned that I may have a tumor - other symptoms I've had which I previously didn't think were significant are ringing in ears, vertigo, headaches, and feeling like I my ears were popping.
I would go to the ER and get a MRI. I have a now 11 year old with NF1. Two years ago she complained of double vision we took her to the ped doctor. He sent us to a eye doctor. We went my daughter had eye surgrey. Than 3 months later I was watching my daughter and her eyes did not seem right I called the eye doctor she told me to bring her in. We went in and she told us we have to do a MRI today we did. We were in the ER the same day next morning she went in for brain surgrey. I was told if I didn't see what I saw which was really nothing. I felt more something was off. I saved her life.
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