Published Feb 6, 2015
At a meeting a few months ago, someone referred to multiple sclerosis as an “iceberg disease.” I jotted down a note to help me remember to write a blog about that idea. In shuffling through a file this week I ran across that note and I thought about it for a while.
Many analogies of an iceberg’s hidden dangers have been put forward due to the relative physics of frozen fresh water versus salt water. The density of ice is 0.92 grams/milliliter; of water, 1.0 gm/ml; and of salt water, 1.03 gm/ml. Therefore, ice has nine-tenths, or 90 percent, of water’s density. In other words, only 10 percent of an iceberg is above water. The other 90 percent lies below the surface.
There are research notes looking at the difference between clinical and sub-clinical MS relapsesthat refer to them as MS icebergs. This research deals with the possible dangers of the NEDA (no evident disease activity) standard of medication effectiveness. There may be no “above the water evidence” of disease activity but below the surface, damage may be harder to see.
Far below the visible surface of the disease, some grey- and white-matter lesions may not even be observed by high-powered MRI machines. And brain atrophy is one of the very scary words we hear in relation to advanced MS. All of these things can be occurring out of sight.
I also think that the MS iceberg is a good way of describing our symptoms.
We’ve heard some of our symptoms called “invisible.” Sometimes people just don’t believe we have MS because they can’t see what we’re experiencing. Even if we have symptoms that telegraph to the world there is something “wrong” with us or we have disclosed our condition, no one can know the whole story of what we’re experiencing.
While many silent exacerbations can be detected by MRI, not all of them are, and we are probably not aware of them happening as they don’t present themselves clinically. So there is activity below the surface that can’t be detected and we can’t feel… but it’s still there.
The MS iceberg isn’t going away, and there’s nothing I can do about it. I guess it’s just a little bit comforting that my MS isn’t the only dangerous thing in the world only showing 10 percent of itself to the light of day.
Wishing you and your family the best of health.
Cheers
Trevis
Don’t forget that my book, Chef Interrupted, will be available on March 1, but you can pre-order your copy now on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.
~~~~~~~~~~~~~~~~~~~~
.
.
.
Visit our MS Learning Channel on YouTube: http://www.youtube.com/msviewsandnews