The Messy Stuff about MS

The path to an MS diagnosis started out with small stuff like being tired a lot, almost all the time. Then there was the occasional fall over nothing, like trying to step up on a curb but your leg wouldn't cooperate. After that, the falls became more frequent when I went out and tried to do some walking for aerobic benefits. I'd keep falling over nothing on the sidewalk and end up bloody and limping my way home.

I noticed the big stuff, the Aha moment, over my Christmas vacation in 2004. I had just bought a new car, had survived the family holiday meal, and was enjoying some time off. It was like watching dominoes falling one after the next.

I started becoming dizzy and I was dropping things, they just slipped right out of my hand. I started having more noticeable difficulty walking, but this time in my little apartment. I was swaying and my legs grew heavy. I could barely get up and down the stairs to my bedroom in my little apartment. My face and arms became numb and cold as if I had had a major dose of Novocain administered in the wrong place. My arms became heavy and I could hardly lift them to do the most basic things. At work people would mention that my eyes were bouncing all over the place, something called nystagmus.

I called my primary care doctor and he gave me some meds to try and stop the dizziness. They didn't work. He ordered blood work and then sent me to neurologist #1 whom we shall call Dr. Clueless. By this time I had a strong inkling that this could be multiple sclerosis due to my internet sleuthing. (I'm not a physician, I just play one online.)

Off I go to speak with Dr. Clueless and tell him my health issues. At this point, everything had been going on for a month and a half. He ordered an MRI of the brain that came back with lesions. Now lesions could be a sign of MS but he blamed them on a car accident I had been in from 1989. He threw up his hands and said, "It's not MS and I don't know what to do with you." Exit Dr. Clueless.

In the meantime, I had visited an ENT for some pretty thorough testing for the dizziness. Those tests all pointed to something neurological causing my issues.

My primary care guy set me up with a second neurologist after I had another really bad episode in the summer of 2005. Extreme weakness in my legs to the point where I could not drive and could barely walk. Let's call neurologist #2 by the name of Dr. Multiple Diagnosis. He diagnosed me with complicated migraines and something else I can't recall now. I didn't have either of those issues.

That December (2005) he admitted me to the hospital for three days of testing to see why I was getting worse. I couldn't sleep without medication, couldn't stay awake without medication, I had muscle spasms and twitches all over my body. I had sensations where my whole body would just vibrate ferociously and I couldn't move for 20-35 minutes. Plus, I had all the other stuff that came along for the ride from 2004.

Dr. Multiple Diagnosis arrived early at my bedside on December 7, 2005, to tell me I had MS.

What a relief to finally know what was wrong with me.

I think his residents might have been surprised that I immediately asked about lesion locations; I now had one on the spine which really pointed to MS, along with the brain spots. I asked about treatments, all shots at that time. I asked intelligent questions because I had been certain all along that I had MS.

I was in the hospital for the better part of three days. I had lots of blood drained out of me and endured what seemed like a kazillion tests: 2 lumbar punctures in the same day because the first one was badly botched and left me bleeding, X-rays, more MRIs, tests for seizures, evoked potentials exams, anything you could think of came my way and I handled it all in stride.

No one from my family drove the 45 minutes to come see me while I was in the hospital. They didn't call me; I had to call them to update them. Even my mother, who is a nurse by trade, didn't believe that it could be MS. She thought perhaps I was making it up.

My own mother did not believe me.

That's the kind of messy stuff that needs to come out from the darkness and be exposed to the light. The lack of caring and empathy by my family hurt worse than all the tests, including the two lumbar punctures.