The "S" Word

I'm 23 years old and I have syringomyelia.

Let me start at the beginning of all of this...

Back in the fall of 2009 I was tutoring one day and half of my body when numb and tingling. It was my arm and leg on one side of my body. At this time I can't recall which side. I thought it was the weirdest thing ever. I called my friend Clyde on my way home because I knew he was around and available. I told him what was going on just in case I crashed, then at least someone would know what happened. I made it home safely and within the hour it cleared. I haven't thought about it in months.

Fast forward to March 13, 2010 at 3am. I was sitting at the kitchen table browsing websites for a new digital camera. And instantly, my left half of my body when numb and tingly. A greater portion of my face, my entire arm and entire leg. The first thing I thought of was a stroke. I ran to the bathroom and looked into the mirror. No facial droop or asymmetry. I could still move the affected areas and feel sensations. I put an end to camera shopping and went to bed. I woke Josh up to tell him what was going on. His first words were "just like last time?". And then it hit me, it was very similar to that one day in the fall. I stayed awake for an hour, hoping it would disappear like last time. It didn't. I cried myself to sleep still numb and tingling.

The next morning it was still there. By noon, almost 9 hours later, my face felt normal and it started resolving in my shoulder and upper leg. I went to work for 3pm. The best part of working at a hospital is having professionals at my disposal to question. By the time I was at work it was only affecting from my elbow down to my fingers, and my knee to my toes. My elbow and knee joints felt dull and throbbing. The nurses on my floor threw out suggestions of Bells Palsy or a pinched nerve, but talked themselves out of it. So I asked a surgical resident. He thought it was probably a brain thing given the distribution and that it affected my face. He suggested I see a neurologist. I went to bed at 2am on March 14th, only to wake up at 11am feeling fine.

March 15, 2010
3:45pm - 6:00pm
My left arm from my elbow down goes numb and tingling while I'm sitting in class. It remained that way while walking to my car and driving home. I'm beginning to get suspicious that only my left side is affected by these spells.

**I should note this numbing and tingling isn't like when your arm or foot falls asleep. The numbness is not as intense and I can still feel touch, and the tingling isn't painful like the pins and needles sensation.

March 26, 2010
5:30pm - 10:15pm
Both of my arms go numb and tingly from my elbows down. It started with my right arm and within a half hour my left arm followed. I was simply sitting in a car, riding around and viewing apartments with my friend. I opted out of babysitting the next morning not knowing if this episode would last into the morning. But at least this time my right arm was involved... that is a good sign... maybe.

I made an appointment with my doctor for March 31st, first thing in the morning. Both her and her nurse practitioner ran me through the gamut of neurological functioning tests. Then they ordered up blood work to look at all of my vitamin levels and hormones. They also ordered up an MRI of my head and neck to look for signs of Multiple Sclerosis which is common in women who are far from the Equator.

Friday April 2nd, I had my MRI. That was a whole new experience for me. They gave me headphones tuned into a great country station. How they ever expected me to hear the music was beyond me. MRIs are LOUD! Every scan was banging and pounding in my ear. And there were different sounds. Some sounded like an alarm clock or fog horn, while others were like a jackhammer in my ear. I like to call my apparatus my "space suit" since I had my head and neck locked in some sort of helmet to prevent movement. The guy performing the MRI was so amazingly nice and really made sure I was comfortable with everything going on. Then they injected me with contrast and took a few more scans and I was on my way, only 1 hour after arriving.

Later that afternoon, I was up visiting my future in-laws, when I got the call. My blood tests were fine, just a low Vitamin D level, which is explainable after a long snowy winter. But my MRI wasn't so normal. They found a "spot of concern" on my cervical spine. At the time they thought it was either 1)a cyst formation or 2)demyelination (aka MS). They pushed me in with the nurse practitioner at the neurology clinic for the following Tuesday.

Tuesday April 6th, and I'm in the neurology clinic. The NP runs me through a more extensive gamut of neuro function testing. She notes that my reflexes of my lower extremities are hyperreflexive. (I googled this to find out that is it congruent with spinal cord injuries...hrmmm.) She mentions a syrinx, but at the time I wasn't listening well enough to say it much the less spell it. She orders an MRI of my thoracic spine and 2 tests: evoked visual response (to scope out my optic nerve for MS signs) and median somatosensory-evoked testing (to see how well my spinal cord conducts through this area).

Friday April 9th, (Keep in mind between all of these appointments I'm driving 2.5 hours each way between school and home. My poor car.) my second MRI. This one was roughly a half hour long. They really cranked the music for me which was much better. The head radiologist was there and after reviewing my scans decided he didn't need to add contrast. I thought this was good and that they didn't see anymore areas of concern. (I'll find out later I was wrong.)

Tuesday April 13th, bring out the electrodes. When I arrived the woman put about 20 red marks on my scalp, grinding her pencil through my hair hard enough to leave a mark. It hurt, I was not a happy camper. For my visually evoked test they covered one eye at a time and make me look at a flashing checker board on a TV. This would tell them how well my optic nerve was sending images to my brain. For the somatosensory test they hooked a small stimulator to my wrist. The stimulator made my thumb twitch which was fascinating to me. This test measured how fast the signal would go from my wrist to my clavicle to the back of my neck to the top of my head. They performed this on both sides.

All of Tuesday they didn't call with results. Wednesday the 14th came and I stared at my phone all morning. I couldn't sit still in class. Around noon, I called and left a message asking about the results of my tests. Around 1:30pm, a random clinic worker called to say that my electrode tests were fine, but my MRI showed syrinxes mildly throughout my thoracic spine. What did this mean? I had no idea. I told her to relay to the NP that I had many questions and would like to speak with her. My afternoon class was filled with more anxiety and staring at the phone.

Finally she called while I was tutoring. (back where it all began.) I grabbed my list of questions and started rambling and taking notes.



I'll continue with this post tomorrow. I'm exhausted after a long day at clinical and have to be up early for classes. I'm glad I've found some place to lay out everything that continues to cloud my mind.