The infusion specialist is wonderful. She exudes confidence and professionalism in her every movement, every step. She was super behind, patients were stacked up, and yet she took her time with each of us, never losing her touch. She still took the time to ask me how I was feeling, if I thought treatments were helping, like she always asks, then pays attention to my answers. Based on the pain I told her I was feeling in my hands, she thought maybe we could increase my Remicade dose since it was my fourth treatment and I still was at the same starting dosage. The doctor agreed and told me we would talk more in his office when I was done with my infusion.
When I told him that I was feeling pretty good with the exception of my hands, he had me go into more detail about what I was feeling. I explained to him that there were really two things going on, one was joint pain, the other was different. Over the last six weeks, the numbness, tingling, needles, and shooting electrical pulsing sensations were not only increasing but also intensifying. I was losing my grip, dropping things, and my hands would fall asleep as soon as I lie down in bed. He pretty quickly said, "well that's just your carpel tunnel", infusions won't help that.
I gotta say, I was pretty caught off guard. What do you mean, carpel tunnel, I thought I had rheumatoid arthritis and fibromyalgia? I was never told I had carpel tunnel syndrome. I immediately felt like I was in the dark all over again. I felt like I needed a list in writing right then at that moment of all my diagnoses, ALL the things that I was diagnosed with. Honestly, on my first visit to his office, he told me I had inflammatory arthritis, I didn't know that was the same as RA. I had to have him clarify. (More details of that visit in another post). So again, on Thursday, I had him repeat what he said. He said, yes, you have carpel tunnel syndrome. Like it was everyday news and that somehow, I should have known this tidbit of my medical history.
I would have thought that if he knew I had carpel tunnel syndrome, we would have discussed it at some point, treatment, information, something. I left the visit feeling like I had taken a step backward and wasn't sure why I was feeling so stunned.
It's almost a week later and it's still on my mind. In general, I really like this doctor, he seems to understand what I need. So why do I feel like I'm not getting enough information? Or maybe I feel like he isn't including me in my treatment? Which is weird that I feel that. I want to talk to him, but I don't know what to say or what to ask without sounding accusatory or confrontational.
My head wants to believe that I'm overreacting, but my heart tells me that I need more. More what? I just don't know.
[originally posted: circa Fall 2013]
