Changed Appointment Style has me undone

A recent visit with my neurologist

I saw my neurologist last week, and, unlike any other doctor’s office I’ve been to, there are detailed notes about the appointment, made by the doctor. As I mentioned in my previous post, we did talk about the BTK inhibitor drugs. But after the appointment, when I went to read the notes my doctor had made, I had more questions. Notes from every one of my appointments are there, using My Chart to read them. I see bunches of errors but somehow, I don’t think they care too much about those, but they do worry me. This last appointment, I noticed that my neuro seemed less engaged than in the past. I know that he has quite a workload: he teaches, he is involved in clinical trials, and he sees patients. I’m trying to make notes to myself so I can ask my questions at my next 6-month appointment. He did confirm that the GI symptoms I had for a full week were likely a type of “stomach flu” and not caused by my every 6 months pair of infusions. He said I might have GI symptoms close to the infusion dates, but not three months after. I told him that now, I was worried that I might have passed the “bug” onto someone else. He told me that was unlikely, but didn’t explain why. He reminded me that because of the infusions I get, I’m more easily affected by these types of illnesses. But this is the first time I can recall feeling sick while on any treatment. I meant to ask him about a possible side effect that I read about. Basically, my treatment makes me more likely to have a heart attack?!! That one was new to me and I can’t believe I forgot to ask about it. He typically does a full neurological exam but not this time.

Basically, I assumed he would proceed as he has at past visits and he didn’t. I kind of lost my rhythm,

and allowed his different demeanor to affect my behavior. I really hope the next visit is more in line with the previous ones, but I guess I need to prepare a little differently and not assume he will be as thorough as in the past. It was unnerving and unexpected and it rattled me. I hope this doesn’t happen again.