“Clinically Isolated Syndrome”: On the Bubble

When I switched neurologists earlier this year, one of the first things he told me was, “You know that you don’t have MS, right?” I knew what he was referring to; as I have not yet had a second major exacerbation or “relapse,” I am still termed a CIS or “clinically isolated syndrome”—the signs of MS on MRI or other tests, but not the requisite at least two episodes to call it full-blown MS.

Make no mistake, I feel that I “have” MS. I have had symptoms outside of the initial exacerbation that fall outside of my past “normal” and are common with MS. I take Rebif (interferon Beta 1-A subcutaneous injection) as if I have MS—or perhaps as to mitigate its severity. But knowing that I’m technically considered a CIS has me in a way living in a state of suspended animation, between Before and After. Sometimes I catch myself thinking, “When? When?”

Of course I hope the answer is “never.” There are days I feel so well that it’s reminiscent of Before (which I barely remember, to be honest). Then there are days, like the night my legs spasmed in bed and I couldn’t make them stop and I was so panicked that I shook all over, that I am firmly planted in After and know this is my reality, and worry for the future.

Welcome to life on the bubble.


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