Orange is the New Pink

Dr. Laina Turner Molaski is on a mission to raise awareness for Multiple Sclerosis through her initiative, Orange is the New Pink. Using collaborative efforts, Laina is seeking to create the kind of awareness for MS that already exists for breast cancer pink. One of her efforts is a book entitled Orange is the New Pink: Stories to create awareness for Multiple Sclerosis. This is my story.

In the summer of 2001, my life partner, my friend, and I were vacationing together. We traveled a lot that year with eagerness to explore the states surrounding our hometown in Pennsylvania. Whatever destinations were within driving distance, we visited them and preserved our visits with photographs. Our last stop on this particular journey was New Orleans, and it was hot, very hot and humid.

After returning home from our adventure, I began noticing a "funny feeling" on the bottoms of my feet. Actually, the feeling was that I could not feel my feet. I knew they were there, I could see them, but I couldn't distinguish carpet from linoleum, hot from cold. At first, I shrugged off the “non-feeling.” I had just returned from vacation, and we had walked a lot. We toured various cities and towns on foot. My feet were fatigued; yes, I was just worn out.

But the abnormal sensation persisted, and that's when I grew worried. In fact, I recall sitting on my bed one sunny afternoon literally scratching the bottoms of my feet trying to bring back any sense of feeling, even pain. In my head, I pleaded with God. Please, God, make my feet normal again. I'll bargain with you. What do you want in return?

More time elapsed and I ultimately scheduled an appointment with my family doctor. This appointment initiated what would become my lengthy MS diagnosis process. I started with a neurosurgical spine specialist to explore the possibility of a pinched nerve. This doctor recommended MRI scans beginning with my lumbar spine and eventually moving up to evaluate my cervical spine. It was a dreadful experience for a claustrophobic. While the radiologist noted bulging discs, the location of these discs did not coincide with the sensations in my feet.

I then had a nerve conduction velocity test to determine the speed of electrical signals through my nerves. No amount of doctor-patient discussion can prepare one for this particular test. Electrodes are placed over nerves on various locations of the skin. Each patch administers an electrical impulse to stimulate the nerve, starting with a small shock and then growing in severity. Then the doctor positioned needles into various muscles, and I was asked to contract the muscle. Pain. Discomfort. Agony. These expressions are simply the best way to describe this torturous test. The pain is followed by extreme body ache and fatigue and, all of this to learn that my nerve conduction was within normal range. While eliminating the diagnosis of some other diseases, the Electromyography did not provide significant information for my current situation.

Having exhausted their part in diseases diagnosis, the spine specialist passed my medical chart on to a neurologist. At my very first appointment, the neurologist explained that the likely cause of my paresthesia was Multiple Sclerosis and, unfortunately, MS is a diagnosis of exclusion that can take years to formall conclude. Many signs of MS can be attributed to a number of other medical conditions and there is neither one sign nor one test that proves this baffling disease. The neurologist waffled over a Lumbar Puncture and ultimately recommended this test in hopes of gleaning useful information for my case. The result? My Cerebrospinal Fluid presented with OligoClonal Bands symptomatic of MS. It was another piece in my MS puzzle but still not enough to conclusively make the diagnosis.

Years had elapsed, and the majority of feeling in my feet had returned although I continued to experience numbness and tingling from mid-thigh down to my feet. Our next course of action, as determined by the neurologist, was a wait-and-see approach. While Multiple Sclerosis was strongly suspected, he wanted to document at least two distinct relapses. So, I waited....and waited....and waited...and worried....and waited. Finally, in May 2007, my body failed me again, and I lost feeling altogether in my legs. While I could still walk, I couldn't feel simple touches to my skin or varying temperature. Another round of MRIs concluded that I had a new lesion on my brain, and I had Multiple Sclerosis.

How do I explain that moment of diagnosis? Elation? Relief? Sadness? Worry? It was a long journey, nearly six years of tests and uncertainty, and I had, at last, an answer. Better yet, I could begin taking MS medications that are documented to slow the symptoms of Multiple Sclerosis when taken early in the diagnosis process. Multiple Sclerosis wasn't a death sentence but it was a disease, a medical condition that could and would affect every part of my life, a life that stretched out before me at the age of 28.

Presently, at 31 years of age, I have developed tactics to control the uncertainty of this diagnosis, both in mind and in body. I created the Sunshine Squad. My team of family and friends annually develops fundraisers and we walk in solidarity to raise money for the National MS Society. Furthermore, my relationship with the Central PA Chapter of the MS Society afforded me the opportunity to travel to Washington, D.C. and lobby Capitol Hill for funds to benefit MS research. These actions are empowering over Multiple Sclerosis and push me to be visible and approachable about my disease, thus living well with a demanding disease.

Thankfully, my Relapsing-Remitting MS has not prevented me from maintaining full-time employment in the field of Public Relations. I have found ways to navigate my symptoms, including list making for memory loss and an online dictionary or web search portal for those times when I forget a specific word I am seeking. This factor is the most painful part of my MS story, I believe. I experience slowed thinking and often struggle in finding words, both of which make my role as a communications professional just a bit more challenging.

Together, my partner of 10 years and I have a young daughter. Amy has been a part of my disease since the very beginning, and I genuinely offered her the opportunity to end our relationship when the final diagnosis was administered. She didn't, of course, and continues to do her best to understand Multiple Sclerosis as well as the many facets that impact our life and experiences together, including fatigue and heat sensitivity. I worry about the strains I may eventually place on her as a caregiver.

Regularly I also worry about the impact of Multiple Sclerosis on my relationship with my child. Dizziness has disconnected me from her life on two occasions already and although Vivienne doesn't understand the complexity of my disease, I feel an emotional twinge when I can’t fully participate in her daily activities. I have made a point to keep a journal about Vivienne's routines and idiosyncrasies so I can recall them in six months or 16 years. But what will happen if one day I cannot walk? What if I can't help my daughter with her homework? What if I miss Vivienne’s school or extracurricular events because of my fatigue or another symptom yet to strike? These are the considerations that keep me awake at night and keep me lobbying for MS awareness, research, and eventually….hopefully, a cure.