Relaping/Remitting ≈ it's over/maybe it isn't?

by Michael S. Kaplan, published on 2006/10/23 00:01 -04:00, original URI:

(this post inspired by someone who recently changed their whole life around just to change it back a few months later, for the very reasons this post talks about. I don't think she even knows this blog exists, but at least one or two of the people who love what she does read here from time to time -- and they will know who I mean!)

If you find find out you have Multiple Sclerosis, it is very easy to start making all kind of crazy, outrageous, extreme plans. These plans are usually based on the symptoms that led to the original diagnosis, and may feel pretty serious since they come on suddenly and these days with an MRI the actual diagnosis can be way too fast for even any kind of "cat is on the roof" kind of comfort pause.

Of course, in the majority of those cases, the symptoms clear up over the next 1-4 months, and you get a firsthand lesson in the meaning of relapsing/remitting Multiple Sclerosis.

So all of your plans change.

Now you may have no symptoms for a while, and perhaps you maybe try to make some cautious plans during this down time just in case something happens. But you don't want to drive yourself or those around you nuts, so by and large you don't. You keep it casual.

This cycle will probably repeat with future relapses and remissions.

After the first few times you start to really take a longer view and realize that as you start to actually keep some minor symptoms during that "tween time" between relapses that maybe this is a big "cat is on the roof" kind of thing, and that you are being given some warning about what kind of things you can maybe expect.

Hopefully you aren't driving anyone mental at the same time -- especially yourself. :-)

I have actually been watching a friend or two as well as a few acquaintances who are going through these earlier steps. Dealing with the fact that everyone knows of another person who also has M.S. but who is doing so much worse, so isn't that great that you aren't? And so on.

My advice? Smile and say thanks, but don't get sucked into that kind of approach. If you want to talk, find others who have M.S. and talk to them, because they'll be the ones who will actually understand some of the weirdnesses that you are dealing with. It is something that I waited way too long to do, and as a consequence it took me a lot longer to actually find some comfort with the whole thing.

(I have ended up with several folks on my IM list for this very reason!)

Anyway, if you find yourself in this category, or the even weirder one before this when the diagnosis is uncertain, hang in there. And try not to take the well-meaning folks too seriously as they often have no idea what they are talking about....


This post brought to you by(U+2248, a.k.a. ALMOST EQUAL TO)

Martin on 29 Nov 2006 4:39 PM:

I am at the even weirder diagnosis uncertain stage! only had a "more than likely" 5 days ago, and am having my first experience of optical neuritus, and a the odd wobbly/hot/cold leg thingy...... And EVERYBOBY knows SOMEBODY who has MS, and its either oooh they have it quite bad or - oh they hardly have anything you'd notice. I wa very lucky though and went to an MS centre and was put in touch with a great guy called alistair who has had 6 years of it -, and is nothing short of a an encyclopedia on this - and many other - subjects. If nothing else comes of my getting this, I think I have met a somebody I have a lot to talk about with only a small part of which is MS... Your blog is good reading, was planning to start one myself :) will let you know how that goes.

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