I have a 17 yr old daughter. Who was diagnosed almost two yrs ago with Trigeminal Nerualgia. She just woke up one morning with her face hurting and it proceeded from there. As the yr went on this gradually got worse. SHe started loosing her hearing rapidly. She has had several genetic tests done and a wide variety of other kinds of testing done also. The only one that came back positive was her ANA. Several MRI's and CT's and MRA's. She was diagonsed with Diabetes also. She has been diagonsed with Multiple Cranial Neuropathy. The nerves that are effected are 5, 6, 7, and 8. Her speech is starting to be effected now. I am needing to know if anyone has heard of any thing like this and if so what is it called ?? She is not a canidate for any surgeries we was told for there is more than one Cranial nerve effected. We have seen so many doctors that it is not even funny. Specialists in the fields of Neurology and Audiology. Some say the same thing others don't. My daughter is in so much pain that it is crushing to see her like this.,,,,,, i would like to know of ANY SPECIALIST in the field of Multiple Cranial Neuropathy. ANY WHERE
Auto immune ear disease testing was done also. Negative. Meds that she is currently on,, Neurotin 1200 tid, Elavil 100 hs, Ibuprofen 600 tid, Metformin 500 bid, Trileptal 600 bid, and others for depression and asthma.
Thank you for reading this and helping in any way you can . May God bless you always.
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