“Please use the blue needle, that one usually gets into the vein in one shot. The pink needle needs at least 3 attempts…”
So this is basically my monthly struggle with the nurses who make my infusion ready. They have a preference of a certain needle and in the meantime I know what works best for my body after all those times. During the shot they also keep track of my blood pressure, heart rate and temperature every 15 minutes. At least they offer me free lunch #optimist.
I am on Tysabri (natalizumab) for 18 months now and all I can say is I owe my life to that medication. It has done so much for me like giving back the quality of life. After one year the new MRI scans showed improvement and the lesions on my brain even began to shrink! Good news!
Too bad there is a but coming up to this story, there is not enough information yet about Tysabri combined with having the JC virus. Like 50% of the population I happen to have that particular virus running through my blood. And JCV positiveness means more risk to the PML virus… now that’s a bigger problem because that one can cause death! Not so good news.
Therefore they established a maximum of 24 shots every 4 weeks and I’m strictly being monitored every 3 months.
The thing is if you stop taking that medicine, they predict a so called rebound effect. Old symptoms can appear or even new symptoms/attacks have an easy access to come around again. Bad news! MS is known to be an unpredictable disease, but knowing this makes things a lot more predictable in life in a negative way! Let’s hope for a plausible plan B, or should I say plan C?
After having to inject myself every day in those first 8 years of having MS, only once a month an infusion is a bit of an alleviation. Over all I am grateful for this medicine.
No, I can not walk a whole mile anymore but I can walk.
No, I can not feel any structure in the top of my fingers but I can hold and grab things again.
No, I have to be careful to not restrain myself so I see double but I can see.
No, I can not fill my days with activities but when I do it’s the quality that counts.
No, my body doesn’t function anymore like I want it to be but at least I can love and be loved.
Your priorities change once you get sick.