Stop in the Name of Leukocytes
I rolled onto the neurology ward of the hospital that has been dealing with my disease from the beginning.
The nurses, whom I’ve met innumerable times, opened with their normal jolly, “How are you?”
I can never resist, “Well, I have got MS!”
It was 8 in the morning. I’d turned up for my twice-yearly infusion of Ocrevus (ocrelizumab), the disease-modifying therapy I’d started taking exactly one year ago.
I was not in the best frame of mind.
My mother had died one week ago. I wasn’t grieving, just somewhat squashed by the additional bureaucratic load that her death had engendered. We’d never gotten on. My mother seemed to be incapable of empathy. I was in my 30s when I fully recognized the reasons for the difficulties in our relationship.
Now I understood why at the age of 10, my father and I had to be quiet and duck down behind our front door so that the person knocking couldn’t see us when they looked through the letterbox. That person was my father’s brother, who was visiting from Canada.
I eventually met him 13 years later, when I traveled to Canada to see my extended family for the first time. My father’s brother and sister, my uncle and auntie had had 16 children — so I had 16 first cousins to meet.
A maudlin atmosphere had settled over me. My mood was exacerbated by the acceleration of my MS in the last few months. My right arm has become an appendage that can still do a few things but is becoming increasingly painful. My ability to write with it is also failing.
A new dose of Ocrevus was something I was clinging to. It might make no difference, but at least I’d be putting up a fight.
Then the sledgehammer.
The nurse noticed something in my notes.
My neurologist had decided on the previous Friday that my low leukocytes level meant I had a small risk of contracting progressive multi-focal leukoencephalopathy — a horrendous, rare brain infection.
It was a good call on the neurologist’s part, but the system had broken down as nobody had informed me.
He wanted to see me the next day, but I put my foot down! Figuratively, of course, because I can’t always pick it up again.
We had a chat on a crackling mobile belonging to one of the nurses. I would have an MRI and then immediately go onto a full steroid blast. I’ve now been given them in pill form, so I don’t have to schlep into the hospital for two infusions over two days.
I’d played the moral-high-ground hand for all it was worth.
What really got to me was the 8 a.m. appointment, I had to get up at an earlier hour than I usually go to sleep.
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Sandra L Stolaronek
Hi John, I completely identify and emphasize with you on that. I'm not awake that early, not to mention arriving anywhere at that time! This is part of the reason why I decided to decline Ocrevus. I think that MS sufferers who are at this stage should never be expected to be in any doctors office or hospital that early! We wake up with debilitating fatigue, that's like coming out of anesthesia every day and even after taking medication for fatigue, it still takes me all day to feel as though I'm awake. As far as the WBC's go, I'm sure that was a scare you didn't need. Maybe you were fighting a virus at the time but PML is something that we all have to keep in mind. I hope you and all of us who are on DMD'S stay safe and protected against that serious and deadly condition! May God bless you and keep you well. ??
Got to the hospitaal at 8.30 am for an Ocrevus infusion. Wide awake at 5 am with usual neurogenic bladder.
But I would've cried if they couldn't go ahead with the procedure. All done and dusted for 6 months.
It would have been so disheartening to have been in your position.
I do enjoy your sometimes very funny posts.
Thanks for your post John - it's always appreciated. I also have to get up at uncongenial hour to make the trek in for an 8.00am Ocrevus infusion. As for leucocytes, the nurse asked me for a urine sample, and later came back saying I had leucocytes in my urine. An infection! (Though I felt nothing.)
Some time later, my neurologist wanted to know if I was pooling urine. I said I couldn't feel anything after I emptied my bladder, but an experiment with a catheter revealed about 100 ml of urine left behind. One thing leads to another! At least the catheter can empty the bladder. But where to from here, I'm not sure.