MS Diagnosis

I originally shared this on in August 2010. My path to diagnosis was relatively quick, and I feel extremely fortunate.

Late Januray 2004

In early 2004, I woke up from a Sunday nap with the left side of my face feeling numb. I thought it just needed to "wake up". Over the evening and night, it spread to the whole left side of my body. You could've drawn a line right down the middle of me. The numbness wasn't "real" numbness, though, because I could feel my skin and use my muscles, but there was a "dead space" in between (if that makes any sense). My left cheek and left 1/2 of my tongue felt so cold it was painful.

By Wednesday, it hadn't gone away and I went to my GP. He examined me (I passed all the standard neuro tests like I always do) and told me that I was a woman under a lot of stress and it would go away. (I was under A LOT of stress at that time. My then husband had lost his job and money was really tight. Looking back, my first three symptoms were triggered by "mental" stress. Others since have also been set off through "physical" stress--i.e. fevers, overexerting myself--or have appeared out of the blue.) Even though I was under a lot of stress, his explanation for my symptoms was malarkey, and I felt completely dismissed. He said if I was still having symptoms in a week, to come back. So I did, and he referred to my neuro. An appointment was made for three weeks away (which was an extremely short amount of time for the neuro I was referred to, who usually has a 3 month waiting period for new patients).

In between my last appt. with my GP (who I no longer see) and the first appt. with my Neuro, all of my symptoms went away. While I was thankful to be better, I couldn't help but feel that I when I met him, I would again be dismissed. But my experience with him (Dr. Frank Fleming at East Carolina Neurology--I love him) was the complete opposite. He listened to what I had to say. He ran the standard neuro tests of walking on toes & heels, can you feel this tuning fork, is this hot or cold, etc, which I passed. again. And then he said three beautiful, magical words...I believe you. Based on my explanation of symptoms, how they progressed and went away, he said he had an idea of what it could be, but he wanted to run some tests.

He wanted to do a lumbar puncture, but I said no. We compromised, and I agreed that if my symptoms came back, I would do it then. I had an MRI of my brain and c-spine, which showed two lesions in my brain. That's when he told me that he thought I had MS, BUT he couldn't diagnose me until I had a second set of symptoms. He told me if they ever came back or if anything new happened, I was to call his nurse and he would see me as soon as possible.

The rest of 2004


March 2005

After those first symptoms, which lasted maybe 2-1/2 weeks, life returned to normal. Then a year later, I went "numb" from the waist down, this time on both sides. Like last time, I could still walk and use my muscles. I could still feel my skin. But there was this space in between my skin and muscles were I could feel nothing. If I knelt on the ground, it felt as if I had a pillow underneath my legs. When walking, it felt like I had a beach ball between my thighs. (This is the closest I can get to explaining how it felt.) I also had the pin prick tingles in my legs and feet.

So I called his nurse. That afternoon, she called me back and told me I had an appointment with him in two days but that he wanted me to have another MRI first, which I was to have the next day. (I know! Fast, right? I told you, I love my neuro.) I had an MRI of my brain, c-spine, and spine, which showed a darkening of one of the original lesions but two brand, spanking new ones too in my brain plus two on my spine. As I agreed, I had a lumbar puncture (followed by a spinal headache--NOT fun! After an LP, when they tell you to remain lying down for a day, they mean it. NO EXCEPTIONS (a lesson I learned the hard way).) I also had the evoked potential tests: auditory, visual, and sensory. The auditory and visual are easy peasy, and most of the sensory exam is bearable, but there were some parts, quick though it was, where it hurt so bad I wanted a teddy bear to squeeze.

I passed my evoked potential tests (which they expected) and failed my MRI and lumbar puncture (which they also expected). I was officially diagnosed in April 2005, and began copaxone one month later. I was on it for three years. In July 2008, I switched Tysabri.

The permanent issues I have (heaviness in legs, stiffness/weakness in left hand) are from those first two attacks. I've had other symptoms, but they've gone away over weeks and months. The longest lasted a couple years (bladder issues), but it went away about a year after I started Tysabri.