Neurology Update from May 8

I was greeted by my neurologist on Monday with a loud 'What is WRONG with you?!' I appreciate his humor in all of this, I really do. He said he kept me in the EMU last month to be certain of his diagnosis, and he felt sure of it. My EEG was 'pristine,' according to him. He said that he likes to be right, and that he is usually right. He felt like it was looking like neurocardiogenic syncope (fainting) instead of epilepsy. He had referred me to the cardiologist, who I saw last week--he told me to stay hydrated and sent me on my way.

My neurologist was really, really surprised to hear that I had more episodes. He said that standing up in the bathroom is probably the most common way he has heard of people having syncope episodes, so he would have passed that off as a blood pressure/blood flow issue. But then, the fact that I had another one in the ER, a few hours later, just sitting in a hospital bed, is what is driving him the most crazy.

Through the neurology appointment on Monday, I mentioned (again) that I do have IBD (ulcerative colitis) and psoriasis, and he asked how long I've had those symptoms. Psoriasis was at its worst right before Lewis was born because I remember having laser treatment on my feet (and being super pregnant). The IBD started right after Lewis was born and was worsening and worsening until just last fall when I started a new medicine (Entyvio). That medicine has been checked out and is not found to cause seizures, but I think my doctor is thinking that there could an an autoimmune connection to my seizure issues.

I am heading back to the EMU on Friday. I'm supposed to sleep deprive myself beforehand and skip my morning dose of medicine to get things moving along. I'm not sure if he's planning to try to trigger a seizure or not--he said he has all of the data from before to work with, so he has more specific objectives in mind. I could stay one night or a longer stay--he couldn't say.

He is going to do:

• another MRI (it's been 2 years since my last)
• a spinal tap (to test for an autoimmune connection)
• possibly a tilt test (to check my blood pressure situation)

And I have to take blood thinners since I developed the blood clots last time. I feel like it will be easier in some ways because I know what to expect, but harder in some ways for the same reasons. Being attached to all those wires is the worst part, but hopefully he can figure some things out and get me going on the right path. As of now, August 1 is my date for driving. If I do have a seizure in the hospital, we start counting all over again (90 days).

I'm feeling lightheaded and having trouble remembering things, which could be from the increase in medicine. Or just my brain calming down and recovering.