Tuesday, 24 March 2015


For those wondering about my neurology appointment on Friday, there was no significant news. I wasn't quite sure what a neuro appointment entailed but turns out it was all a bunch of reflex tests along with some of the 'don't let me move your limb' ones that I failed miserably. It was all fairly straightforward but embarrassing at how little resistance my muscles have.

He showed me my brain MRI that was taken immediately after the seizures and explained all the findings to me even though I didn't really know what he was talking about. Apparently it's 'common' for people post-transplant to have blah-blah-seizure disorder (I'm sure that's what it was called...) which means he isn't ready to say that they were caused by the high amounts of meds. Even though I, and all the other doctors, are pretty sure that is the cause.

I will have a follow up MRI to see what's changed and in the meantime I'm allowed, and have started to, wean myself off the seizure meds. It's a slightly scarey process because if the meds are keeping the seizures away, now I'm prone to have another seizure. But obviously there is no point in being on the meds if it really was a one time thing. The only way to know is to decrease the dosage slowly and see what happens. Isn't experimentation fun.

The most frustrating part is that he would not give me the okay to drive for at least another 3 months or after the follow up appointment. Gah! I miss driving a lot and Isaiah is not a huge fan of being the chauffeur.

No comments: