I’ve never been what I’d consider “very physically fit” but I’ve always been active. Over the last 18 months, however, it has been as if instead of multiple sclerosis, my diagnosis was actually Suddenly Lazy Syndrome. I was fortunate to have recovered completely from the exacerbation with full function in every extremity. I have also thus far not experienced the heat sensitivity that many with MS describe. There should have been no reason for my decline into soft and mushy. Yet, here I am.
My most prevalent symptom is stiffness and inflexibility in my legs and back. I did gymnastics recreationally as a pre-teen, and I recall with some nostalgia the long-gone-by days when I could slide effortlessly into the splits or kick my leg high into the air. Now, I can’t even touch my toes. Hell, I can’t even get remotely near my toes. I used to have biceps I was proud of (I could thank my job for that, supplemented at the gym). While not totally atrophied, I now see my arms as closer to limp chicken wing than “wow, nice arms!”. Again, there is no excuse for this. I have absolutely no restrictions on physical activity (doctor-imposed or otherwise). I work a physical job, so I’m not unaccustomed to getting moving.
I’m starting over, very slowly. I think resuming regular exercise (in addition to what I get at work) will help in remaining permanently mobile, increasing my flexibility, and maintaining my emotional health, which is just as important as my physical health. I’ve decided to forgo the gym for now and focus on at-home bodyweight and dumbbell exercises as I rebuild strength and cardiovascular fitness. Just another way to remain Mostly the Same…despite my MS.
(A great website for practical fitness and nutrition for a rockstar body is by Josh Hillis, found at www.joshsgarage.typepad.com)
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.
My diagnosis was in April of 2011…relapsing/remitting MS.
I knew what it was before they told me for sure. I knew when I first felt the symptoms (numbness first, then weakness); I knew as I lay freezing cold in the MRI machine taking pictures of my brain and spine. And I knew when the neurologist called me on my cell phone less than an hour after I left the radiologist. The MRI is indicative of multiple sclerosis…you will be on SoluMedrol right away… I was getting food at Chipotle. I had to excuse myself from the line to go to the bathroom and cry.
When the symptoms began, I went to CentraCare. Being without a primary doctor, there was nowhere else to go. The numbness was my only symptom at that point, starting at a spot midway on my left abdomen and radiating outward slowly but surely until it covered my entire left side within two days. The doctor told me to go to the E.R. if I developed muscle weakness. I laughed inside myself and disregarded…even a couple of days later, when the muscle weakness indeed started on my lower left leg. It wasn’t an emergency. The emergency would have been had I had to pay for an emergency-room MRI rather than the one my insurance paid for in the radiology clinic.
In the year 2012, I am a blogging novice. I hope I get readers. I hope you all are out there, my fellow neurologically challenged.