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My Hopes and Fears After My Transverse Myelitis Relapsed

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We’ve all had that feeling, the one where your leg has gone dead and you shake it furiously until the frozen-burning-tingling-crawling-prickly-numb sensation escapes you. After minutes, you breathe a sigh of relief and continue on your way, leaving that utter discomfort behind.

Imagine now if that feeling never went away. Imagine that, while you have not lost your mobility, you are in a constant state of that frozen-burning-tingling-crawling-prickly-numb sensation – but it’s not just your foot or leg this time, it’s the entire lower half of your body.


Now throw in some nerve pain, pangs of electricity that shoot up your legs and through your spine right up to the sides of your head. Accompanied by tight banding of your ankles and knees with cramp-like pain you can’t stretch out…

Welcome to my world. The last 12 days, anyway. Since my transverse myelitis relapse.

My first onset of TM was almost three years ago. It began very slowly, with days of pins-and-needles down the right side of my body which slowly progressed to frozen-burning-tingling-crawling-prickly numbness from the chest down (excluding my lucky left arm). I had the infamous MS (multiple sclerosis) hug that corseted my torso and often stole my breath. It was hard to believe it was not causing immense internal damage and I had to be reminded it was just a sensation, as were my other symptoms, caused by the demyelination of my spinal cord.

Yes, all of this stemming from a tiny lesion in my cervical spine inflaming my spinal cord, thinning the myelin sheath, wreaking havoc.

This time around, I have two active lesions – the OG at C4 and and a new one illegally inhabiting the space between T4 and T5 of my thoracic spine. Fortunately though, I’m not as bad as the last time. Those warning signs become fully ingrained into every fiber of your being and nothing goes undetected. (Even the false alarms that have your neurologist reassuring you there was “nothing new on your latest MRI…and of course you have residual symptoms and you probably always will…but if you are really worried present yourself to the nearest emergency doctor immediately without hesitation…”)

Which brings me back to 12 days ago. I knew it was happening again. I just could not believe it. It has been the main source of my anxiety and depression. I just can’t possibly explain how much this has affected me mentally. But here we are again, just as I feared. I have to remind myself I am not as bad as the first onset – we got onto this really quickly this time. Began intravenous treatment immediately. But I cannot help but fear progression. Do I feel better or worse than the day before? What is that new sensation in my face? Why does my head feel this way? Did they miss something on my brain scan? Is that why I have to have another full MRI in a couple of weeks? Does my neuro think I’ll recover this time?

There is nothing normal or predictable about the way I presented. Although my initial idiopathic diagnosis has more of a probable cause now. I mean, it’s got to be the RA medication I was on, right? It was hard to determine with absolution at onset, but now I’ve relapsed, surely? There was literature to support that the medication had been linked to MS-type illnesses before. Then there’s the “once-you-have-an-autoimmune-disease-you’re-more-prone-to-developing-another” theory. Was this inevitable? (My body does have a penchant for attacking itself.)

Whatever the cause, this is the result. And any regret for treating my rheumatoid arthritis with the only type of drug I’ve had any real success (despite its potentially debilitating side effects) is just a waste of time. What’s done is done. My body had a minute chance of responding this way, but it was a risk (after a painful year-long deliberation) we decided to take. And it was taken. Non, je ne regrette rien.

What I do regret is not reading more books in primary school during the MS read-a-thons. Maybe if more money had been raised there’d be less neurological disease? Cures even, for MS, TM and the zillions of other illnesses that rob people of feeling, function and normality.

I actually feel relatively lucky. Even though I am chronically ill, I am very aware and very grateful that things are not “all that bad” for me. I’ve got mobility. I’ve got a chance at recovery (and yeah, more relapses) but I have recovered from this before (after six long months) and will hope I can do it again.

Thanks for reading. I’m doing my part for Transverse Myelitis Awareness Month – and no, the irony is not lost on me.

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Thinkstock photo via Archv.

Originally published: June 28, 2017
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