What I know, what it means, and why this is actually a good thing

What I know:

I had a spinal tap on Monday. Let’s discuss how fun that was. Actually, it wasn’t bad except for the part where I fainted. It didn’t even hurt, so I’m not sure why exactly I fainted. It was after the first numbing needle went in. I got lightheaded and next thing I knew I was on the floor. I efficiently freaked my dad out; my mom was too chicken to go back with me.

The reason they use a spinal tap in the diagnosis of MS is for two reasons 1) Check for any viruses that I may have that could have caused this (things like Lyme Disease). 2) To check for the protein products that myelin (the protective covering for nerves in the brain- what is being attacked in the brain of an MS patient) breaks down into when it is attacked

They also did a blood test that day to check for anything else that it could possibly be (pretty sure this is the same blood test I had the first night in the hospital).

My neurologist called me on Thursday to tell me that it is definitely multiple sclerosis. I have a real diagnosis.

What this means:

She reminded me that it looks like I have had several clinically silent attacks. What this means is I have more lesions (so many that I’ve lost count; my chart says “multiple), but they are all located in areas of my brain not affecting life.

The lesions on this scan are the easiest to see

The lesions on this scan are the easiest to see

She told me that I didn’t have to start treatment right now if I didn’t want to. I can wait until my next attack.

That’s not me. I chose to start treatment as soon as I can. With the history of silent attacks, I don’t want to wait until my next obvious attack in a few years and have had 6 or 7 silent ones. The lesion volume will be higher, the attack could be worse and the disease will be further progressed. I would rather take something that may potentially lower the volume of lesions and potentially delay even the next silent attack.

Attack early and fight hard.

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I was given a third medication option by the neurologist who did my spinal tap. It’s an injection 3 times/week. I’m not excited about that part (except I have a wonderful friend who has volunteered to do it for me once in a while). I am, however, ready for this journey; there is a reason I have this. I don’t know what it is, but I’m eager to find out.

Why this is actually a good thing:

I keep getting funny looks when I say this is a good thing. It sounds ridiculous at first, I know.

Had the spinal fluid not contained the protein or a virus, we wouldn’t be here. We would have to start all over again to try to figure out what the heck is wrong. As okay with everything as I have been, I’m kind of over being poked and prodded every week (the upside of that is my pain receptors are dying a quick death and I am now able to fall asleep when I get my eyebrows waxed).

We had a plan before I even had the spinal tap. I knew what I was going to do. The future may have been unknown, but at least I knew how I was going to attack it. Without a diagnosis, I had no plan. Now that I have a diagnosis, the future at least has a path I can follow.

The other reason this is a good thing is that I realize this could be so much worse. Going into UCSD that first day, I had no idea what to expect. Then they started talking brain tumors. No matter how disappointed I get that life is turning out like this, I will ALWAYS remind myself of that first night when they thought it might be a tumor; I’m lucky to have MS.