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Robin’s NMO Story – Living in the Moment with NMO

Posted by: The Sumaira Foundation in NMO, Patient, TM, Voices of NMO

I was diagnosed with Neuromyelitis Optica on July 25, 2015.  My story is a little different than many of the stories I’ve heard or read about because my symptoms started only 11 days earlier.  I had a fever and began to have pain in my hands.  Over the course of the next few days, my flu-like symptoms increased as well as my joint pain. By the time I went to see my primary care doctor, I had pain in all of my joints and I felt constantly woozy.  My skin began to burn and feel prickly, like a bad sunburn. First my forearms and shins, then my entire arms and thighs.  It was extremely painful to shower, get dressed, or to even be hugged by my kids.

I have been a physical therapist for over 15 years and seen many different presentations of pain.  What worried me most about this was the symmetry of my symptoms.  The sunburn feeling and joint pain were in the exact same locations on each side of my body.  I knew that this was more than the flu.  I knew it involved my nervous system to some extent.

My mind was overwhelmed by thoughts of “is this MS?” and “Is this a brain tumor?”  I couldn’t bring myself to search anything online… I was scared.

My husband took me to the ER on July 23rd.  I was having trouble walking and keeping my balance.  I was evaluated numerous times by different specialists, blood was drawn, a spinal tap completed, and I was sent to have a cervical spine MRI.  I was diagnosed with Longitudinal Transverse Myelitis and began a 5-day schedule of Solumedrol infusions.  The following day, both brain and thoracic spine MRI’s were ordered to have as baselines for any future symptoms.  I felt immediately better: the sunburned feeling resolved after my first treatment.  I wasn’t woozy anymore; no fever or joint pain. Crisis averted. Or so I thought…

After a late-night vitals check, a doctor who I hadn’t seen before came in and asked if anyone had reviewed my brain and thoracic spine MRI results.  When I told him they hadn’t, he abruptly left the room and returned with a series of monitors on a cart and pulled up both MRIs.  In total, I had 5 thoracic lesions and 3 brain lesions, in addition to the original cervical lesion spanning 3 vertebral segments…..I couldn’t believe it.   There was a lot of talking after that, in which the only thing I grasped was my diagnosis would be changed to NMO.

I was able to return to work several months after coming home from my 5-day hospital stay.  I only work part time now as fatigue hits me faster than it used to.  For exercise, I have given up running and instead do yoga.  I have restricted my diet extensively since my diagnosis: I am gluten-free and dairy-free, eating only clean ingredients.  I am on a 6-month schedule for Rituxan infusions and have had good results thus far.

My only residual symptom from July 2015 is occasional right shin numbness that increases with stress or a lot of activity.   I feel healthier than I did before my diagnosis but there will always be a question of ‘What’s next?’.  I have come a long way from waking up each morning and doing a body check – can I see? Can I feel and move my arms and legs?  Is there pain?  The daily struggle is acknowledging that I can’t control everything. My focus needs to be on staying positive, making healthy decisions, remaining strong, and persevering on the not-so-good days.

Throughout this whole process there have been many different emotions: disbelief, anger, sadness, rage, helplessness, and believe it or not, gratitude.  To be grateful in light of this experience was such an eye opener for me.  My goal is to find the good in each day whether it’s small, like good weather for a soccer game, or big, like 2-year anniversary of diagnosis without an attack.

I try to be present for each day, living in the moment, enjoying the small things with my kids, husband, family, and friends.

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