Today was a pretty big doctors appointment for me. It was my first check up with the neurologist since we cut my treatments in half this summer. It was the appointment where we were going to see how to move forward from here on out. I had a feeling that things were not going to go how I wished they would and I was right...
I still have no reflexes in my hands or feet, but I can't remember the last time I did so that was nothing new. I have, however, lost some strength in my hands and legs. I knew I was feeling weaker since school started and the tests today proved it. With CIDP my symptoms increase when I am sick or just tired from doing more than usual. Since school started I have been doing A LOT MORE than usual. I haven't coached since getting sick so I was anxious to see how my body would respond. I have been happy with how I am handling it so far. Yes I am exhausted but I'm functional and that is a good thing.
Since I am losing strength my neurologist decided to bump me back up to full treatments. In his words "these treatments suck. They are super expensive, time consuming, and they work." I totally understood what he was saying. They do work and because of that I will probably be on them for life. He did negotiate with me and instead of going every 3 weeks I get to go every 4 weeks now so that helps. I am disappointed. I wanted to be done but on Friday at my last treatment I was there until 8:00pm. I was the last patient they had so I got the chance to talk to my infusion nurse for a while. I asked her how many people she has seen with CIDP that have gotten off of IVIG for good. She said in 10 years she has seen 3 and 2 of them took themselves off because it didn't work. I realized pretty quickly that this was something I better prepare myself for.
If these treatments keep me functioning and out of a wheelchair then I will not complain. I remember how sick I was in January. If these treatments keep me from getting like that again then I will pay the price every time, I will sit (or nap) for 6-7 hours, and I will thank God that these treatments do work for me.
