Slipping Over the Event Horizon Into SPMS

John Connor avatar

by John Connor |

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Isn’t it just like me to start my column with a physics analogy that is already confusing? Please stick with me, as all will be revealed.

My point is that if a black hole is big enough, you might slip through its event horizon without even noticing. There would be no way out.

However, if you were in a spacecraft, you could live out your life before facing inevitable “spaghettification.” Not only that, with time effectively stopped, you might even get the chance to watch all the galaxies disappear! Eventually, gravity would pull your body apart into nobody knows what.

Such is the nature of secondary progressive MS, or SPMS. It’s like you’re on the way there, grasping at every solution you can until you gently slip across the event horizon. Once in the black hole of SPMS, nothing can save you.

At least it seems that way.

Because of COVID-19, I haven’t seen my neurologist for over a year and a half. I actually sent him one of my recent columns, which he said was very useful, especially in lieu of a physical meeting.

He phoned a few weeks ago. I had no idea it was actually an arranged consultation. Having just been released from the hospital, I was completely discombobulated. I scrambled for the first few minutes, probably saying something completely inappropriate, like it was nice to hear his voice again. Hopefully, it wasn’t that bad, but it was definitely on the cringe scale.

He confirmed that I now have secondary progressive MS. I say confirmed, because I’d already suggested I had it in the column I sent him. Still, it’s nice to have a second opinion.

All he could offer me were versions of chemotherapy. Having previously been scythed down by Lemtrada (alemtuzumab), I gracefully declined. When I took Lemtrada, it immediately affected my right arm overnight and made walking far more difficult. It sapped my strength.

Undoubtedly, I would have arrived at this point anyway. But maybe I would have had a few more months, or even a year or two, of wheelchair tennis.

Quality of life is my preference, rather than scrambling against the odds like an addicted gambler declaiming, ‘This time, it will be different.”

A Phase 2 clinical trial called ChariotMS is about to start here in the U.K., for those with advanced progressive MS. My neurologist is recommending me to do it. So, I guess I’m now officially in that category of MS.

The trial is testing a drug called Mavenclad (cladribine). According to the MS Society, Mavenclad kills T- and B-cells, which for everyone else are an important part of the immune system. For us MS lot, they’re what attack the myelin sheaths around the nerves in our brain and spinal cord.

Mavenclad has side effects that include making you more prone to the herpes virus. Shingles also can be a problem. Patients using it even get vaccinated against chicken pox.

I’m old enough to remember chicken pox parties, in which adults took their children to intentionally get chicken pox, because it was far worse to catch later in life. My mother, who today would be described as an anti-vaxxer, thought this was mad.

I think I caught it anyway, and I missed out on the party.

Even if I’m lucky enough to get into this new trial, there’s a 50% chance I’ll receive a placebo. If that’s the case, at least chicken pox won’t be a concern.

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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, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Leanne Broughton avatar

Leanne Broughton

Mavenclad has been around a few years. I was offered it after a relapse in 2018. I am SPMS. I chose Ocrevus instead. I only did Ocrevus for 4 doses. I did find my walking ability deteriorated after the 3rd and 4th doses. My MRI showed no new lesions. Stopped Ocrevus as I didn't want to lose any more mobility. Quality over quantity. If my MS is active again I would choose Mavenclad

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John Connor avatar

John Connor

Unfortunately, living in the UK, I don't seem to have the choice of Mavenclad unless I get on a study. I reckon my chance is more than slight!

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Anthony H. avatar

Anthony H.

Is cladribine not available otherwise? If you can get it, you may prefer that, knowing what you are on and making up your own mind.

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John Connor avatar

John Connor

Not at present under the UK NHS it seems.

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Tom M avatar

Tom M

I had a similar experience with Ocrevus. Others may see benefits, but for me it was just side-effects. I have been better without it.

Reply
John Connor avatar

John Connor

I really liked it till it threatened me with imminent death...

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Nicholas avatar

Nicholas

Hey John, sorry to hear that spms diagnosis. It's a big mental hurdle.

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