My mother was diagnosed with Multiple Sclerosis (MS) when I was two. Eighteen HORRIBLE years later she died a few weeks before my 21st birthday. The progression of her disease was swift and unrelenting. She started out with the worst possible kind (which is rare), and therefore she never had remissions. There were times that the rate of increasing damage slowed, but it never went away completely. It certainly never reversed! I learned several things with great clarity watching my mother die.
- It is the quality of one’s years that matters most, not the quantity of those years.
- Ignoring something bad does not make it go away. It actually makes the situation worse.
- My worst nightmare is being diagnosed with MS.
I was always told that MS was not a genetic disease and therefore my odds of getting it were the same as everybody else’s. However, I have since come to learn that many doctors/scholars disagree with this belief and there is plenty of evidence that MS does indeed run in families. So my odds of having MS are a little bit higher. Then last year someone else in my family was diagnosed. That’s the beginning of a run. That’s one more blow to my odds. That means that if this were a bet in Vegas, the smart money is on me being diagnosed with MS in the next few years.
Needless to say, this has preoccupied a large part of my thinking for some time now. Then recently, my aunt asked me if I had been tested – you know like the breast cancer test that they have that shows if you have the genetic marker showing a predisposition to the disease. I of course told her that I hadn’t, because a test doesn’t exist. But this got me to thinking, maybe I was wrong. So I contacted an MS Center and asked them if there was a test. I was right, the answer is no. However, because of my family history they said that I could/should be screened by a neurologist who specializes in MS.
Silence
They could even help me find one in my area if I didn’t want to drive down to the center.
You could hear a pin drop.
Now I don’t know what all is involved in this screening and whether there would be definitive answers. I always thought that the only way that doctors could tell if you had the disease was after it was already full blown and wreaking havoc in your system. I had assumed that the only option open to me was to sit it out and let time tell. Apparently I was wrong. But now I’m left with the quandary of whether or not I get screened. The way I see it, there are only a few probable outcomes.
- I don’t have MS and will never develop MS.
- I don’t have MS right now, but it might develop later.
- Results are inconclusive, only time will tell.
- I likely have MS, but no damage is evident yet.
- I have MS – worst nightmare realized.
So the question becomes will screening make me worry less or worry more? I’m not a doctor, so I realize that there are probably a lot of other possible outcomes, but since I can only work with what I know I’m going to work with these. If I get screened there is only a 1 in 5 chance that the screening will remove my worry and fear. However, there is a 3 in 5 chance that the screening will not only do nothing to allay my fears, but it might make them worse. These odds aren’t really in my favor. I know that knowledge is power and it is always better in the long run to know what you’re dealing with so you can react intelligently. But ignorance is also bliss. If I’m not going to start having symptoms for three years, will the quality of those years be better with me not knowing, or will they be better with the knowledge that there is a rain cloud on the horizon just waiting to sweep over my life?
My head knows that the prudent choice is to get screened and face whatever it is that needs to be faced head on. My heart isn’t sure that it can survive one more wrenching ache and prefers to stay ignorantly hiding from it all. I don’t know. Do I listen to my head or to my heart?
What would you do?