Hello! So glad to have found this forum! Already it has been soooo helpful to me! I was diagnosed with GN over 2 years ago and it has been a learning experience. So many things i feel and symptoms i have/had were blown off by my doctors and/or i was told they were not related to eachother. So far i have seen that others also have them and that we as the patients sometimes know more than the doctors! its important for us to share with eachother so we can educate ourselves and our doctors!
I have had GN for 2 years after going to the doctor for an ear infection. Many tests later and my own conclusion i referred myself to a neurologist. The diagnosis was GN with possible TN. I finally found a doctor i like and he listens to me and my body. I am on neurontin and tegretol which help me to function in everyday life. Before this i was barely able to drive, was dizzy, off balance, had taste problems, numbness in my mouth and lips, pain and feelings of drooping in my face and eye just to name a few. I have also consulted doctors about the gamma knife surgery to which i was told not to have because of the risks and seriousness of the surgery. they said my "other" symptoms were not related to GN and so i should not have the surgery. having read other peoples stories on here i really now 100% believe they are!!! it has been a great help so far! thankful for you all!