Now what?!

Life with MS. You never wake up alone.

In the first five minutes of waking up, facial pain pulls my left cheek west, while my eye wants to move north, and my scalp just seems oblivious to any sensation at all.

Fantastic! Just the way I want to feel on any given day!

NOT.

Today, however, I want to feel as bad as I possibly could. “Sure, of course I am interested in being a guinea pig for neurology students in their mock exams. Needless to say, one can never have enough neurologists, especially in Ireland.”

“Full day? Of course, beam me up, Scotty. Anything for the cause. If I’m tired, I can always sleep. A hospital is a professional sleep-environment after all.”

One by one, about ten medical students passed by my examination room, as if they were my real neurologist already. I love that bit of drama they bring to their mock exams. So professional already. I could play as nicely or awfully as I could. Not a huge task, since I sometimes have both angel and wicked witch on each shoulder, battling it out between each other.

But not that day. Nope.

Last Saturday I was just… me… No added sin or shame, angel or witch, drama or down-played cool.

Just.

Me.

“Severely tired.”

“Still?”

“Yep, very much so. Unrelenting, defeating and well… let’s just say that “taking a nap” always turns into hijacking my bed.”

“Facial pain.”

ErmForgetfulness! I even forget my own symptoms.”

“Headaches, unaware whether it is just a migraine or trigeminal pain fooling me around.”

“Any other symptoms, surgeries, illnesses?” I am asked.

Do you have an hour, so I can fill you in?”

“No, I’m afraid not.”

“OK… No problem at all, you actually save my energy levels by me not having to tell.”

Laughing again. Optimism is key. See the good in every bad seed.

“Clinical presentation?” Neurological exams seem to go well, all ten of them. Finger-nose-finger searches, cerebellar or intention tremor back, but no biggie. Leg strength, not up to much, walking at a snail-pace-rate sometimes. Indifferent Babinski reflex one minute, pronounced the next.

Ataxia” one of the students says. And then another one, and another one.

Hey, have you lads been comparing notes, or what?!

Hyperreflex most of them also say.

“Bad ataxia, three steps in.”

Hyperreflexia as strong as that of a 14 year old, but abnormal for a 40 year old.”

“Cerebral speech problem. Dysarthria.”

“Hey, go easy on me here! Too much information!” I think, adding “Yes, I sometimes slur my words, but I don’t drink alcohol!”

What?

“Acquired ataxia. One foot in front of the other, right heel in front of left toe, like cops ask you to walk if you behave a bit funny.”

Wobbly. Wob-be-ly-oooooh! Three steps and I tumble left or right. Not OK.

“Autonomic Dysreflexia is hyperreflexia.” OK. Nearly kicked a couple of students in their chin when their mighty hammer hit my knee.

Don’t blame me, I hardly ever smack my own knees with a hammer at home, it doesn’t seem like a very healthy thing to do. If I even have a hammer. Yeah, where has that hammer gone to?!

The students are asked Differential diagnosis?

What? How on earth did I end up in a House, M.D. episode?

What do you mean my “leg reflexes are as hyper as those of a fourteen year old, but abnormal for someone my age to have?” Jeez, I should be the next Number 10 in Irish rugby, or a place kicker in the NFL. A boot to match all the MS silliness in my brain.

“You’re so optimistic, you have the attitude that will help you in the future.”

“Why thank you, you are very intelligent. Want to be my future neurologist?”

Day over. Mightily tired, but feeling good inside my heart. Helping students take a peek in what is supposed to be my brain, feels as if I’m at least a tiny part of the very big question they will have to ask themselves further down the line. Neurology? Or not neurology?

And you know what? You can call out new symptoms, or upgrade those that went away are came back with a bang. You’re not getting me, you hear me, you disgusting, little, freaky thing that calls itself MS?

You. Will. Never. Beat. Me.

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© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

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16 Comments

  1. Can really relate to your hyper active reflexes. I once turned a ballet flat into an aerial missile. That was the day I started to find the humor in my MS. I will never forget how hard the doctor and I laughed. It’s a trick I think we should start breaking out at parties. :)

  2. Catherine says:

    Hope you feel better each and every day! Terrific attitude! For your ataxia, keep an eye out for BalanceWear Weighted Vest when it makes it’s way to Ireland. Really helped with my balance and falling! OR, when you’re feeling better…road trip! Be well friend!

    • Billie says:

      Haha yeah… or just forget what symptoms you have, making you look like you’re just inventing your MS. Ah yeah, I always say there’s always tomorrow and giving up is not an option. Never is, never will be :D

    • Billie says:

      Could be optic neuritis, Sarah. Had that before being diagnosed. On the other hand, it could be bad migraine or cluster headache also. I’d get myself checked out so. Will keep my fingers crossed for you!

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