I saw the neurologist this week (I’m going to refer to her as Red Riding Hood from here on out). After the examination and describing my symptoms to her and the neurology resident, Red Riding Hood asks me if I am having vision problems. Intermittently, I do have trouble focusing and today is one of those days. She has noticed my pupils are large and that they are slow to adjust when she shines light in my eyes. I describe to her my discussions of this issue with my eye doctor over a year ago. She asks me if I have been having digestive issues and if I have low Vitamin D and ferritin – and I do! This has been a consistent issue. I tell her about my malabsorption and other problems and she says “aaaahhhhhh….hhhhhaaaa” like this is what she suspects I might say. She then tells me that she suspects I am experiencing autonomic dysfunction caused by a tumor somewhere. She doesn’t think it is the pituitary tumor; it is likely whatever the NCI is looking for. She thinks the smoke smell likely is a partial seizure disorder and prescribes an antiseizure medication and orders the EEG which I will have in a couple of weeks. And we will go from there. She asks if I have any questions and I don’t really have any, because I am completely taken off guard and don’t even know what to ask.
As I walk back to my office, I call my husband to fill him in and tell him the appointment was kind of mind blowing. It is not often someone is able to explain a huge number of my symptoms in one sitting like that. The other amazing thing we talked about is how different doctors appointments are these days relative to even 18 months ago. If I would have gone to a doctor 18 months ago complaining of smelling smoke, I would have been laughed out of the office. Now, instead of being told I am just a head case, I really feel I am being taken seriously. Now, I don’t feel like I am being laughed at – I hear real concern. It puts my mind at ease, because I am obviously concerned too and it is reassuring to feel someone who might be able to help actually gets it.
But as I walk and we talk, now I have questions. So maybe this can explain the symptoms, but what does it actually mean? What exactly is causing the autonomic dysfunction? Is this serious or not? Is it reversible? Ah Google. How I love and hate you. I tortured myself reading everything I could get my grubby little fingers on for two days and then realized I had to stop. No matter what Google tells me, it doesn’t change the main facts. Whatever is going on inside my own body, whatever is spitting out peptides, hormones, causing reactions and symptoms, is going to continue on its merry way whether I am sitting inside on my computer reading every study on paraneoplastic syndromes published since 1975 or sitting on a patio in the sunshine having a mojito.
I am smelling smoke. My vision is blurry. I am tired and have a whole host of other symptoms. But I am ALIVE. And I am not on my own anymore, figuring this stuff out with just Google by my side, fighting to try and get a doctor, any doctor, to listen to me. I’m not out of the woods yet, but I now have a team of doctors, my family, and a whole set of fellow patients making the journey with me. And it is really fucking sunny today. Time to put away my computer and focus on living today. Red Riding Hood can worry about the smoke for now.