When Goldilocks tried that first porridge it was too hot, the second was too cold and the first was just right. The same can almost be said about my experience talking to neurologists over the course of the last few weeks.
When this all started about a month ago I went to my primary care doctor who sent me to neuro doc number 1. There are two schools of thought in medicine; paternal where the physician dictates a course of action to a patient who dutifully follows it and fraternal where the physician and patient work together. Given my huge problem with authority figures (wonder where I got that?) the former just pisses me off. Neuro doc number 1, was absolutely firmly in the paternal camp. She told me, “You have had two seizures therefore you have epilepsy. You will get bracelet, you will wear it. You will fill this prescription and take it. You will refrain from driving, biking, swimming, taking baths, climbing trees (seriously, what am I? 10?) or ladders. Avoid stairs and escalators if you can. Sleep with a mat next to the bed. Go directly to epilepsy jail. Do not pass Go! Do not collect $200.” Ok, she didn’t say the last part but you get the gist. Not only did she talk to me like an errant child but she scared the crap out of me. I am already scared, I don’t need more fear from my health care provider.
Neuro doc #2 didn’t really see me officially but is someone I know. He didn’t mean to scare me as much as he did, he just wanted to make sure I went ahead with certain tests that I had been blowing off (but the MRI and MRA are scheduled for next week and I have a host of other tests over the next few weeks. Yes, I am moonlighting as a guinea pig). He told me that I had to get the MRI & MRA to rule out certain things one of which scared me so much I am not even going to tell you what it was but I am pretty sure I don’t have it.
Meanwhile, I have been reflecting on my symptoms. Communicating is very important to me and it has been a challenge a lot this year. Sometimes, I cannot find the right word, a problem I never have, other times I can’t speak at all. I had thought this was laryngitis — and some was — but when I have that I can whisper, when I have this I cannot. (Good news on that front, can’t talk for whatever reason? There’s an app for that! I have Speak it! on my iPad now.) Then I stared having seizures and then headaches and now some strange visual thing that only impacts my left eye. None of this is good or normal. Time for another doctor.
Enter Dr. Rhanni Herzfeld. I told her my history and what’s going on now. I explained, as best I could, my long health history and told her about all the concussions. She said there just isn’t enough information to properly diagnose me with epilepsy or anything else. She said she wants to run the battery of tests that are now all scheduled before doing that. She is really kind and took all sorts of time to talk with me. She didn’t lecture me on all the things I shouldn’t do or make me feel like a freak of nature.
I may be back at square one but compared to where I was earlier in the week, square one is not a bad place to be. I have found porridge that is just right.