MRI no change but I’m worse. The pool theory.

MRI no change but I’m worse. The pool theory.

You might think that’s great you had no active lesions on your MRI, no new lesions either. Yes, it is but that is a Relapsing Remitting MS signifier that my main MS drug, Rituxan, is suppose to prevent. It is working which is definitely great. The reason I’m not celebrating is because this MRI result is only part of my picture with MS. There is another part, it is thought of as Secondary Progressive MS.

Secondary progressive MS (SPMS) is a stage of MS which comes after relapsing remitting MS for many people. With this type of MS your disability gets steadily worse. You’re no longer likely to have relapses, when your symptoms get worse but then get better. … https://www.mssociety.org.uk/about-ms/types-of-ms/secondary-progressive-ms

This is what the model is for SPMS. It makes sense but I’ve come across another one that makes more sense. The pool theory by Dr Steven Krieger.

According to Scientific American, Krieger’s hypothesis is like a swimming pool in need of repair, “Imagine a pool with mountains rising up from the bottom. The mountains represent scars in the central nervous system; the water surface is the threshold at which symptoms appear. Lesions below the water line do not cause symptoms whereas those jutting out of the water do.”

In Krieger’s theory, the older we get and the further MS progresses, the less the brain is able to compensate for the injured areas, which is akin to water slowly leaking out of the pool exposing more mountains (lesions) and their symptoms make themselves known. He refers to his theory as a topographical model.

This concept, by Dr Steven Krieger from Mount Sinai Hospital in NYC, actually looks at MS without the label. I’ve enclosed his article and others for you to read that explains why the MRI might stay the same but you get worse.

https://www.scientificamerican.com/article/think-of-multiple-sclerosis-as-a-leaking-swimming-pool-video/

http://www.msunites.com/a-new-model-for-measuring-ms-vs-the-four-types-of-ms/

https://nn.neurology.org/content/nnn/3/5/e279.full.pdf

you can follow Dr. Krieger on Twitter @SKriegerMD. I saw him talk on this and it finally answered my questions why my MRI was fine and I seemed to always be worse. It was enlightening for me and I hope it will be for you as well.

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