For those that don't know:
I started seeing a new neuro in 2007. This was the first time I had a new neuro since I was dx'd. Yes, the neuro who dx'd me is still practicing
The new neuro kept refering to me as having MS/Devics (NMO). He was a little freaked out by my c-spine lesions
His reference to NMO was starting to tick me off - I don't believe I fit NMO and he wasn't real helpful in helping me find something that would help my pain.
So back to my original neuro. He also didn't think I had NMO and said the other neuro was going by the old way of thinking. I had the blood test for NMO just for peace of mind. Results - Negative.
Trileptal - appears to be working. My pain level has decreased
My neuro is increasing the dosage - slowly. I did blood work today to check my electrolytes as Trileptal can deplete electrolytes.
My pain does increase with hormonal fluctuations and I asked him about that. He said they see women have an increase of MS symptoms with hormonal changes but they also see it with seizures, migraines and other disorders.
My neuro said my pain appears to be nerve pain of some sort but he doesn't like to say it's definitely MS. He thinks it's important to think outside the box and keep an eye on it just in case, over time, my symptoms and pain indicates looking in a different direction.