During my first visit to see Dr. Rookie in late April, his clinic scheduled a follow up visit in August. In the week leading up to the August appointment, I sent Dr. Rookie a copy of my Cunningham Panel (CP) results, along with other family member’s test results and lab tests that revealed the active infections informing their PANDAS. I also had a written request that I handed to him inquiring about the willingness and ability of his medical institution to treat me for PANDAS.
Thinking about this August appointment with Dr. Rookie still blows my mind. I don’t have to try to recreate the conversation with him because my husband recorded it on his phone.
The initial part of the conversation involved Dr. Rookie evaluating the symptoms that initially brought me into his office: feeling loopy, imbalanced, dizzy , cognitive concerns (memory, troubles”finding” words, lack of focus), numbness and tingling on my right side, etc. In the first five minutes, we went round and round, so to speak, about exactly where I felt numbness and how often I felt numbness. At the time, I felt goaded. It seemed that he was trying to find me saying something inconsistent. It felt like he was trying to demonstrate to me that I was an unreliable witness about my own health.
In re-listening to the tape, I don’t feel as strongly him having ulterior motives. I think he was honestly trying to do his job. And, to affirm his correct observation, I had improved. For example, one of the most significant ways that I had improved was that I felt safe to drive; for nearly 6 weeks after the flu I did not feel balanced and clear-headed enough to operate our car. (Thank God of Uber Express– the cheapest version of Uber!)
But I knew that, nearly 5 months after the first visit, I was far from feeling normal. I tried to be clear about what I meant . . .
ME: My greatest concern right now is that I feel sick. I just don’t feel well. I feel achy. I feel fatigued. Mentally and cognitively I feel. . . over loaded. . . . I have to apologize for all the notes [ I brought with me today] because I don’t feel like I can just say things; I have to write them out and read them. . . I am not confident in my ability to remember what I have to say.
He directs the conversation to questions, again, about the numbness that I am feeling. On the tape, I hear myself having a hard time remembering and communicating clearly. I ask him about the lumbar puncture (LP) and what he hopes that would reveal.
DR. ROOKIE: To be honest, I think its going to be totally normal. I think from a neurological perspective, you’re totally normal. I can’t say this more clearly. We can talk about PANDAS and we can talk about the Cunningham Panel, but from my perspective. . . from what I can observe. . . [you are normal].
I look at you and we’re having this conversation and you are very worried about a lot of things but the things that you are worried about seem not to be PANDAS but rather this malaise and not feeling quite right. . . these tend to not live in the brain per say. I don’t know where they live. You’ve had a lot of blood work from me and from other doctors and they haven’t shown any real abnormalities –that’s the main thing [ I observe].
In the moments that followed, we did talk about PANDAS and we did talk about the Cunningham Panel. Looking back, I really admire Dr. Rookie’s frankness and honesty. As painful and awful as it was, I did not leave the office visit wondering at all about what Dr. Rookie thought about me.
Categories: The story continues