Friday, April 3, 2009

MS and me

I was diagnosed with multiple sclerosis in early December of 2005. It took two neurologists to finally diagnose me correctly long after I had thought that MS was my diagnosis. The first neurologist couldn't find anything wrong with me even though I had lesions on my brain. He told me that there was no way I had multiple sclerosis. Maybe I should write and ask him for my money back.

The pictures above are not mine, but they are MRIs (magnetic resonance images) of a person who does have multiple sclerosis. I just searched through google images for an image that would be appropriate to go along with today's post. You can see the lesions or sclerosis (scars) on the brain. They show up as bright white spots. When I look at my own MRIs it seems like everything is lit up or nothing is so I can never tell my own lesions from what should be there. My new neuro's PA has to point them out to me and he does.

I have one lesion in my spine around C3-4 and a handful or more in my brain. The ones in my brain have lessened over time which is possible. Lesions can heal themselves (or remyelinate) but it doesn't mean that they will. I have had a decrease in my number of brain lesions so that means some of mine have remyelinated. My spinal lesion has been there since the 2005 diagnosis so that one appears to have staying power.

When I was originally diagnosed, after three days in the hospital and one botched LP (lumbar puncture aka spinal tap) and one done under fluoroscopy (X-ray guided) and a bazillion other tests, I went on Copaxone. Copaxone is a daily MS med that comes in injectable form. Yep, that means that you give yourself a shot every day and remind yourself every day that there is something going on in your body that can pretty much do whatever it wants to do. Two of my greatest fears are waking up blind in one eye or paralyzed on one or both sides. Sometimes MS manifests itself that quickly, one moment fine and the next with a big problem.

For some people there is a denial stage when they are first diagnosed. For me, it was more of a "Finally!" moment, one I had been searching for for one year. I presented with lots of various MS symptoms starting in December of 2004. Some symptoms started long before that, primarily fatigue which has been a problem of mine since high school. My first major symptoms were weakness, numbness, difficulty walking, nystagmus (eyes jumping from left to right), dizziness, and a weird variation of L'hermitte's sign which was like an electrical current passing through my entire body which would render me unable to move for about 15-30 minutes. All that and there was nothing wrong with me!

Those first two years of being diagnosed, and most definitely the first year, found me often online at a community called It was a place where I could go and ask questions of other MSers and feel like I belonged. No one in my family had had MS and my mom didn't even believe I had MS at first, even after the neurologist diagnosed me. (Not to mention that no one in my family came to see me in the hospital for three days and they lived 50 minutes away. I drove myself to and from the hospital.) That site was a godsend for me. I also found MS blogs that were another source of inspiration.

I no longer have to go to those sites every day like I did in the beginning. I am a person with MS, an MSer, but I am also a writer, a teacher, and a woman who is closing in on 40. MS isn't my whole life anymore but it does affect my life on a daily basis. I take a number of pills in the morning and at night to control my symptoms. Lately the pills haven't worked as well because I am often not able to sleep throughout the entire night and my legs have become more restless. I also am out of work on a medical leave that ends on 1 May. I worry about my cognitive skills that affect my writing on here. (You get the cleaned up and edited version.)

I also no longer take Copaxone daily. I switched to another medication called Rebif, a three-times-a-week injectable medication known as an interferon. I am now on a third injectable med called Tysabri. It comes in an IV infusion form once every four weeks. As I type I can look down at my right hand and see a slight bruise from a blown vein. On my left hand I have a much larger bruise on top of my hand where I had a successful infusion on Tuesday.

I have MS and it has me. I am a blogger with MS but I write about lots of things. If you have any questions about multiple sclerosis please ask me. I'll do my best to answer them. Thanks for reading.

PS: I need to send a shout out to my sister, CNS, who is going to make a monthly donation to the National MS Society. You rock, sissy. Ditto.


Denver Refashionista said...

Thanks for sharing the story. Still, I say you have MS, it does not get to have you :)

Nico Blue said...

Thanks for sharing! Fatigue is a killer with me too :P