I had a conversation this morning with my neurologist. This was my specialist in NYC however I did have the conversation with my other neurologist last month. It is on a topic we have been questioning with every UTI I’ve dealt with since April. Is it worth continuing suppressing my immune system anymore? I have certainly not been stable on Rituxan. Part was due to the pneumonia, can’t blame Rituxan on that decline. However, over the last year, I have not stabilized. I got better from leaving the hospital and then continued to get worse from that point. I’ve dealt with so many obstacles over this year between UTI’s, C-diff and IBS. I have been on antibiotics since April. It is ridiculous.
In all honesty, I’m exhausted. My body is tired fighting these infections. It is so depleting fighting infections and multiple sclerosis. I feel like I’m constantly trying to climb up a hill that is covered with ice. I get up and than I slide all the way back down. I can’t seem to get an answer from the doctors that helps to stop the cycle. Stopping Rituxan to improve my immune system is the one consideration for future. It won’t even solve the problems today. I’m not due for my infusion until November. My B cells will probably still be depleted for a few months even after the date my infusion is scheduled. I’ve been on Rituxan for so long that my doctor feels that even when my B-cells return, they are altered. They won’t be as strong. Therefore, I shouldn’t have any relapse risk. Relapse for my doctor is ANY new lesion on my MRI. Hopefully my immune system will eventually be less compromised. Yet, this is months away, maybe even a year away. That doesn’t solve today’s issues and I don’t know how to get through them anymore.
Neurology did suggest infectious disease doctor to deal with both gastric and urinary issue. I just saw a second gastric doctor that certainly didn’t help. I added a urologist as opposed to my pcp because I was getting nowhere with them. Now infectious disease…another start over. I’ll be dead by the time I get answers. I’m tired. It’s just becoming too difficult lately. I never wanted to throw the towel in but I am just getting beaten down.