Stop in the Name of Leukocytes – Multiple Sclerosis News Today

I rolled onto the neurology ward of the hospital that has been dealing with my disease from the beginning.

The nurses, whom Ive 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. Id turned up for my twice-yearly infusion of Ocrevus (ocrelizumab), the disease-modifying therapyId started taking exactly one year ago.

I was not in the best frame of mind.

My mother had died one week ago. I wasnt grieving, just somewhat squashed by the additional bureaucratic load that her death had engendered. Wed 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 couldnt see us when they looked through the letterbox. That person was my fathers 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 fathers 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 Id 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 neurologists 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 cant 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. Ive now been given them in pill form, so I dont have to schlep into the hospital for two infusions over two days.

Id 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.

Sheesh!

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

In 1982 John Connor was a stand up, sketch writer & journalist crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would. Comics Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at Londons Comedy Store The Cutting Edge. He was also a leading UK Casting Director specialising in comedy including one of the hippest shows Black Books [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV My Family. TV & MS was a step too far and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes Fall Down Get Up Again an irreverent journey with MS.

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Stop in the Name of Leukocytes - Multiple Sclerosis News Today