Hi everyone,
I'm Hilie, 29.
I just need some ears to listen. I'm frustrated, and I don't know where to go. After years of enduring face pain and numbness I was diagnosed with trigeminal neuralgia. My neurologist diagnosed me after an MRI of my brain was ok. The treatment was amitriptyline. I was on it, and it didn't help. So I was put on nortriptyline, and when that didn't help he suggested botox injections. I was not ready to go there because I was sure there were other medications available. I moved soon after the suggestion for botox and went to a new GP who would not listen to my concerns, after a year, she finally referred me to a new neurologist. My problems have gone from periodic face pain and migraines, to all over numbness/tingling(back, arms, legs, and feet), muscle spams(the kind that you can physically see), tachycardia, and brain fog. I can't form a sentence on some days. So finally after all this time of being switched between zoloft and amitriptyline, switched doctors. My new GP immediately said it sounded like MS, and I got referred to a pain specialist.

Here's where things got weird. I went to the pain specialist today, and told him all my problems. I didn't leave anything out. I told him that I once had a trigeminal neuralgia diagnosis, but now I feel like it's a completely different problem altogether. I showed him my hands shaking and he said that it's more likely that I have several different conditions, instead of just one thing causing them all. I'm only 29, so I see how he can think that, but I've been having these problems for 10 years now and the treatments for trigeminal neuralgia are not working. He told me to increase Gabapentin, and that we'd do a gamma knife surgery. I feel hopeless right now, because he just didn't listen. My problems have progressed very rapidly over the last 5 months. So do I continue this procedure, and just hope that he's right? Or am I really crazy to think that it's something more? I was hospitalized in March with my heart rate being over 150 and it was determined that it was not cardiac related. I've also never had an actual neurological exam. The neurologist I saw a few years ago didn't do one, he just said I was young and my MRI(of my head) looked healthy.

I'm also told him that I had a neurology appointment coming up in the next few weeks and I wanted to see what he said, and he just blew me off and pushed for the surgery. I'm really scared, and I'm hurting, I feel like no one is listening to me.