Between you and me, do you often feel like a medical enigma? Or like a thespian in a strange, perilous play, even?
Notice the face?
For obvious reasons, I haven’t shared this picture since it was taken at the end of 2006.
“So, why share it now,” I hear you ask. That is a very valid question. You see, my mind is stuck in a rut, the kind of rut that takes you to Dr Google who will tell you that you will be dead by the end of the week even if the only medical thing you do is sneeze once or twice a year.
Dr Mozilla is as inept as a neurologist, as he might inform me I will make the end of the year if I stay offline for at least four weeks. Considering that today is December 3rd, he does have a point, but not one I care to examine any further.
All joking aside, your input would be appreciated since I sadly – and simply – can not remember if the mechanism of why my face is so… ironed out as if I fell into a jar of Botox, was ever explained to me.
This may sound incredulous when you know I was diagnosed with MS in 2005, and when I spend so much time in the hospital for checkups.
But, since memory issues are part of my MS-sponsored pyjama party, I now always forget to ask my neurological team. Also, time is short already and I have more pressing questions that require an answer first.
If you have been hanging around here long enough, you will know that facial pain – trigeminal neuralgia – is like a vicious, tainted affair, and it is still hard to know who came first, TN or MS. Being a lover of Shakespearean drama, they would tell you they arrived around the same time.
It would, therefore, be extremely unlikely if the relationship between MS and the trigeminal nerves were never explained but it lingers as a major question in my head. After all, my facial nerves have been trying to find my mental trip switch for a long time and I already have the TN diagnosis and its treatment.
Still, I am looking for answers about the contortion in my face.
A 100% mad grimace, that is clear.
Any other neurological mishap?
To know why I am going over the image in my mind, I might tell you how “the face” became such a “thing” in my mind. Now, I’ve accepted MS’s place in my life, so I deal with the good, the bad and the ugly as they come along, but sometimes I trip over my two feet.
I am only human.
Sometimes my memory unwillingly drags me back to the moment I was almost – 99% almost – diagnosed with MS. The other 1% came sometime later.
After checking into an empty Accidents & Emergency Room at 6.30am on a cold and wet Monday morning, I refused to leave until I knew what was going on inside my body. I received a record number of medical tests in a record number of days.
X-rays. Blood tests. CAT scan.
More blood tests. More X-rays. Venous ultrasound.
MRI scan. Lumbar puncture.
Another lumbar puncture.
No stone was left unturned.
The MRI test results were supposed to arrive a few hours after the test.
The morning my inner dialogue sometimes keeps dragging me back to, my consultant was 1.5 days too late delivering the outcome of the MRI scan.
I knew I was in trouble.
The incredible tiredness was out of this world.
The way I kept on yelping while talking sounded like I was on drugs or sniffing superglue. Let me assure you, I don’t even drink alcohol, let alone sniff things that can glue your nasal cavities into one big lump of sinusitis.
Sitting next to a cold window on the train, bus or car. Brushing my teeth. Singing. Kissing. Sleeping on the wrong side of my face. All this was beyond normal. Everything turned into piercing facial, eye and ear pain.
What was happening, was not funny anymore.
“You have a high probability of multiple sclerosis.”
When my consultant put down my medical file, I saw “High probability” written at the top of the document.
“High” didn’t even come close to how it felt inside my mind.
This was “Girl, you are so part of the MS club now!”
(Winning the jackpot was never my forte).
But, the dashing young physician said: “Please, stay, I will be right back.”
(Sir, where do you think I will run to? You crashed my pyjama party without an invitation and I don’t even have the energy to ask for a glass of water)
Upon his return, he positioned a few younger doctors around my bed.
(As if crashing my pyjama party wasn’t bad enough)
They were asked to look at my face.
One of the younger of the bunch said, “The left side.”
What left side?
Why the left side?
Why not my right side, which should be the right side.
“Stick out your tongue, please.”
(Seriously? I fell in a train wreck and I’m asked to stick at my tongue at a pack of young doctors?)
More questions followed. The more they asked, the more I felt deeply out of place. As soon as they left, I ran to the bathroom to look at myself with doctors’ eyes.
With shock, I saw what they saw.
The left side of my face was noticeably different than the other side.
Or feel it before.
Upset. Disbelief. Anger.
These feelings almost literally slapped me in my face.
(I love irony and sarcasm. Do you?)
This was THE moment I realised that all was not well.
Heck, it was worse than “just not OK.”
What else am I missing? An arm? Half of my brain?
Why did I not see this sooner?
When I put my hands on my cheeks, the difference in skin tone made me choke. On my right side, I could squeeze skin between my fingers. Not so on the left side.
Where the hell did my lovely left cheek go?
I wanted to run home to look for my missing skin tone and my sanity.
What else am I missing?
Wrinkles. Missing from my forehead. I have become rather envious of people who can use them to their benefit in their body language.
A dashing smile? Also a thing of the past. When people tell me to smile more, I grin. When they tell me there will be no picture without the smile, I grin even more. That’s about the only body language my face is up to. You try doing all this while lightning strikes your face when you do, every few seconds.
There’s often no sensation on the left side of my face. Or the top of my head. Blowing my cheeks: nada.
Trigeminal nerve pain. Facial pain also referred to as tic douloureux or the suicide disease. I sure know how to pick MS symptoms.
As you can tell, the time around a neurodegenerative diagnosis is a period where too much is happening and it’s often difficult to focus on what is happening. All you can do is prepare for hospital appointments as best as you can. Go in with a clear mindset of what you want from your neurologist.
Here we are so. I cannot remember if my face became like this because of trigeminal neuralgia.
Or perhaps not knowing is the best?