“My Story… ” Monday: The Diagnosis


The neurologist’s secretary seemed a bit alarmed as I broke into sobs and she backtracked a bit, saying, “Um, you appear to be in a LOT of pain. I can call you if anything opens up sooner, okay?”


And what could I do? I nodded, thanked her, and gave my husband the update. We headed home.


By the time we reached our house, I had already received a message asking if I could come in the following Monday morning, which was three days away, as opposed to 24. I took it, even knowing it was going to be a logistical nightmare to get all my children where they needed to be at that time.


I managed to make all the necessary arrangements to get them to their respective classes and, through sheer determination, I made it through the weekend. I really couldn’t eat, so I was subsisting on “diet shakes”, which tasted nasty, but required no effort and kept me from collapsing. I was sleeping 2 — 3 hours total each night and I was so, so weary and cranky from that.


Just folding a load of laundry turned into a huge event. I was just so tired. I was also so sick of being in pain– by now, it never ended. I had those sharp, shock-like pains that shot across my face periodically and made me want to slice my jaw off. I also had a persistent burning, throbbing pain that never went away.


Still, I felt optimistic simply because I knew I had an appointment. I was desperate to find the doctor who could explain, and, hopefully, fix the situation.


Monday dawned and I met the neurologist. By this point, I was delirious and felt half-crazy. I was also convinced that people must think I was either a huge wimp or making this up since there didn’t appear to be anything wrong with me.


“You’re not crazy,” he said to me. Those were his first words and I almost wept with gratitude.


He reviewed my chart and put me through all sorts of reflex and balance tests.


“Your BMI is perfect,” he told me, and I remember thinking, “Seriously? I don’t care about my BMI. My weight is not even close to important to me right now. Gaining or losing would be so much easier than dealing with this incessant pain.” Also, I would later learn that I had lied to him about my weight– I had lost nine pounds over the previous six days without realizing it.


“You’re very healthy,” he told me.


Honestly? I didn’t want to hear that. That made me feel crazy again. But he continued on,


“I believe it’s Trigeminal Neuralgia.” He went on to explain that the trigeminal nerve runs from the lower jaw up to the temple and, when it’s irritated, it misfires and causes “some of the worst pain known to mankind, according to the medical community.”




He told me that anti-convulsant medication is very effective in treating this type of facial pain, so he prescribed that. He also put me on an anti-depressant, allegedly to help me sleep, but I also think it may have been tied to the fact that Trigeminal Neuralgia is nicknamed “The Suicide Disease.”


“Email me. Every day,” he told me. “I want to know how you’re feeling and how you’re doing. We may have to adjust the medication.”


I nodded.


He continued, “This won’t kill you. It’s not a fatal disease. But it IS miserable. We’ll get it under control. You’re a very healthy young woman– you’ll live at least 50 or 60 more years.”


The thought was horrific, at the time.


I was feeling optimistic again, though. At least I had a diagnosis. At least it was treatable. Did I like the idea of being on medication for the rest of my life? Not at all. But, at that point, getting some sleep and peace were my primary concerns.


“Oh,” I heard him say, “and I am going to recommend some more testing. An EEG and an MRI.”


“Oh?” I queried.


He hesitated. “Well, the thing is… you’re actually very young for Trigeminal Neuralgia. We don’t usually see it in people under fifty. And, when it shows up in your 30s like this, it can frequently be a sign of multiple sclerosis. So we’ll need to check into that.”


And, so, with that… I left.



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