So I am in the middle of my first major relapse since my optic neuritis, this one causing problems with movement, especially walking, because of right side weakness. I called my neurologist’s office yesterday morning ready to beg for an appointment with anyone so I could get started on steroid treatment, and the first person I talked to was sometimes condescending, asking if I’d been in the heat or especially stressed, as if I were having a slight flare up instead of a relapse. Given my trouble walking and driving, worse since Friday, I knew it was a relapse. Fortunately, my doctor’s assistant Angela called me back and cheerfully said we were going to “work on making it better.” She talked to my doctor on the phone (what a relief that she is still connected to decisions being made) and the nurse practitioner who will oversee my case in the meantime. Although I am still not officially diagnosed because they will do that in person when they get me in, Angela told me to stop by the hospital for a urine sample to rule out any possibility of a UTI, which steroids would make worse, and then set up home care to come by and start me on three days of incredibly potent steroid infusions.
When I returned from the hospital, where the urine sample was not made easier by the bros in the tech lab fewer than two feet from the bathroom door laughing and having a great time, the home service called to say that since it was my first time on steroid therapy, I’d need to get to the office for observation over the first dose. Fortunately, my father ran over to pick me up because I could not drive the distance. When we arrived, we had to wait for two hours for the pharmacy to mix the solution, so I didn’t get started until 3. Because this was new to me, I was amazed by the inflated ball of liquid with its own pump that is set up to slowly infuse the solution over four hours without needing to be hung up. This prevents the need for hospitalization, and I’m so grateful for it. I didn’t have any adverse reactions, and we were allowed to leave at 5, my infusion ball carefully packed in a little purse, still doing its thing.
This medication gives horrible metal mouth as a side effect, like sucking on a bunch of dirty pennies, but I can live with that for a few days. It also sent my blood sugar soaring 200 points higher than it should be, which is not abnormal but still scary. No MS treatments come without major side effects, so you have to weigh which option is worse to live with. And steroids don’t fix relapses; they simply speed up the process of bringing the inflammation down to reduce symptoms a little sooner. Outcomes at six months are the same with or without steroidal treatment, so whatever damage this one has done to my nerves is done. I didn’t want steroids for my optic neuritis because I could live with it; being unable to walk was another story.
I’ll hook up my own infusion today after I get a little more water in (can’t drink it with metal mouth because it magnifies the intensity ten times). I’m so happy to be doing it at home in my pajamas on my couch. My mom will come with lunch and to break up the monotony, which helps more than anything else.