Not Sure What To Say

I have spent the last 34 years, since my MS diagnosis, deliberately avoiding the subject with everyone except my wife and my doctors. I never mentioned it to my (now grown) two children, and they never brought it up either – taking their cue from me, no doubt. But I stumbled across this website a few minutes ago, and decided on an impulse to throw in my two bits.

My symptoms are relatively mild compared to many MS sufferers, but pretty obvious – semi-paralysis on the whole left side of my body, which causes my left arm and leg to flop around in an ungainly way. About 13 years ago, I started wearing a brace on my left leg, and that helped a lot. I also notice some blurriness of vision and slurry speech, but neither is particularly debilitating, and I have not experienced the extreme fatigue, headaches, etc. that others have suffered. I don’t get the acute attacks, just the constant symptoms that have gotten almost imperceptibly worse over the years. I do hate the feeling of numbness in my feet when wearing shoes, and would go barefoot all the time if I could. Now it seems the symptoms are spreading to the right side of my body as well, which is worrisome.

My experience with doctors is that there’s nothing much they can do, and it almost seems their role is to “observe” rather than to cure. They prescribe one MRI after the other, and seem disappointed when the results are not as decisive or as dramatic as they would like. If it was up to them, I would have an MRI every year, but I’ve been keeping it to one every 3 years or so. I just want to get on with my life and stop fooling around with pointless procedures.

It is clear from what I have read on this website that there is a wide range of symptoms, and no two MS sufferers have exactly the same experience. So I am reluctant to recommend anything to others. For what it’s worth, with my relatively mild symptoms, I have been able to pursue a strategy of trying to push through it, walking and (especially) swimming as much as possible, eating and sleeping well, and generally not letting myself be defined by the disease.

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