I am so grateful to have stumbled across this site, I have hope again!
I have been suffering from various symptoms since having a really bad cold, almost 4 years ago now. I have seen a neurologist, ENT, dentist - I am undiagnosed, actually correction, my ENT was my last contact, she says I must have trigeminal nerve damage and had to learn to live with the pain and symptoms. I have had numerous CT’s, MRI’s, hearing tests, nerve tests, and oral radiology scans. My now constant symptoms are neck pain, feeling of a lump in my throat, non-stop tinnitus in both ears, dizziness, constant headache. I have a burning throbbing pain in my left ear, jaw, I get electric shock like pains in my left temple and teeth. Sometimes the left side of my face feels numb but it isn’t if that makes sense? My throat isn’t so much sore as it always feels dry and a little raw. My Dr’s originally thought it was MS, then ear problems, then TMD, here’s the thing…I had a 3D oral x-ray done and the Dr’s radiologist report noted nothing wrong with my TMJ’s but did note that I had elongated styloid processes; I made a note to point this out to my neurologist who dismissed it and said there was nothing else he could do for me. It’s been 4 years of daily suffering in pain and feeling like my head would explode from the pressure; it has severely affected my life and that of my family. Stumbling across this website has given me hope again. Reading other people’s stories has convinced me that this is what I have, and there is hope if I can only find a Dr who knows about the disease and how to diagnose it. I am obtaining my scans on CD and taking them to a new Dr. next week along with all my research, fingers crossed he will listen.