I apologize that I haven’t given you guys an update via the blog yet. Drum roll….. I was accepted to the trial and I have received my first two infusions. I’ll give you a little break down of what goes on during these appointments.
My baseline 25 step test, 9 hole peg test, clinical evaluations were established. This is the jumping off point. Hopefully these scores will improve as the trial goes on. I see the doctor ever three appointments, and go through longer evaluations, including your standard neuro poking and prodding. The doctor is nice though. I was doing the evaluation where you touch the neuro’s finger. He only asked me to touch the finger but out of habit, I touched my nose after touching his finger and I had to laugh. After 15 years of neurologist evaluations, my body knows what to do automatically through these tests.
I was monitored for the first 7 days after my first infusion with sensors to monitor electrical signals within my body. I affixed three sensors, in the morning on my chest- over my heart, on the outside of my left thigh, and the outside of my left calf. As the seven days went on I developed a little bit of a worrisome reaction to glue or whatever that makes these things stick. I switched to my other leg, though I was not supposed to, for a day or two because I was worried the marks would be permanent. Luckily I do not have to wear them after every infusion and the marks did fade.
I received the infusion. I am either getting the high dose of the medication elezanumab, a low dose, or no dose at all; in other words a placebo of saline. Even on the bag it says elezanumab or placebo.
This is a double blind trial, so for the duration of the trial neither the doctors or I will know which of these three I am receiving. This is why I think I am receiving the medication.
- It feels like something besides just saline is flowing into my veins. I am already on the DMT Ocrevus. I receive saline before I feel the medication and I can feel the difference between the two. However this is still conjecture.
- I am wiped out for two days after the infusion. I am just really, really tired.
- My husband notices a difference over those two days. He gets worried about me because of the initial weakness.
So if this is making me feel like crap after I receive the medication, why am I still continuing this trial? I am in this for the long haul. My body has been breaking down my myelin coating for 15 years. It’s going to take some time to rebuild. I don’t know how much time, but for now, while there isn’t anything too alarming, I’m going to keep going.
After the first infusion I got hot. My husband said I was a bit feverish during the nightafter my my first infusion, and during the day I had a temperature of 99 degrees, whereas I usually run right around 98.
They give me snacks, juice, and a packaged grocery store style salad. I am thinking I should pack something for that will fuel my body a little better. The first two infusions I was tempted by a nut, cheese, and fruit pack. I want to make sure not to give into the temptation tomorrow because I want to see if the symptoms I am having are a result of the infusion, or just that I ate some cheese. (I am on The Wahls Protocol diet and cheese and dairy is off the diet).
This morning I have my third infusion. I am nervous. I have already been feeling tired and having more spasticity, worse MS Hug, and just overall not feeling well. So I’m not looking forward to possibly feeling worse over the next couple of days. At least it is a short appointment so I can come home and rest a little before the kids get back from school.
There is hope in this process. I want to get some of my abilities back I lost. Most of all I want this numbness to go away in my legs and arms, hands and feet. It has made it so much harder, being able to feel less. My numbness is deep, like a muscular numbness more than a surface numbness. After 10 months of this numbness my muscles have weakened and I’m trying to get back what I have lost through physical therapy. If I could have just one result from this trial, it would be for this numbness to lessen or go away entirely.
Well, my car has arrived at the infusion center. I was transported in luxury in a town car. The perks of a clinical trial. I’ll let you know how it goes. 😘🤞🏼🙏🏼🧡