Is lost

It took two years to finally get my diagnoses for Trigeminal Neuralgia. After those two long years, which I know I am lucky because for some it took a lot longer, even though I hated having the TN diagnoses, it was nice having someone finally tell me that I am not crazy. However, I was hoping my neurologist would also help me with the muscle issues that have been going on. Every time I mentioned it, he would just nod and go on. Now that he has given me a referral for a neurosurgeon, I am not sure if I will ever get my answers. The muscle cramps, spasms, tingling, sometimes numbness and weakness is driving me insane. It seems like there is more and more muscle symptoms coming and going every day and I just wish I had answers. So frustrated.

Poor you, I too felt that same reaction over my diagnosis. I was starting to doubt myself over whether it was real. I’ve also felt like some of my symptoms have just been nodded at and ignored, my specialist makes me feel more like a number than a person. Don’t have any solution for you other than to keep persisting, is there anyone you can take with you too your next appointment who can help you to get your point across?

Sorry I haven’t answered or been on lately. I have been in and out of the hospital and mostly laying in bed hating life. As for my cramps and spasms, they are all over. It started after I had 8 months of muscle weakness on my right side. The cramps/spasms started on the right and now are in both legs, back, everywhere.

Hopingforthebest . . . My husband typically goes with me to my appointments to try and make them see how much this effects me. Even when I went to the neurologist dragging my leg, he said nothing. I am still waiting for the neurosurgeon to call me with an appointment. It has been weeks and all they tell me is that they have to review my records before even getting an appointment. In these last weeks, I have had to cut my hair off and now I am looking to get contacts because I can't wear my glasses anymore. I am crossing my fingers, hoping for something soon.