On Thursday, March 14 at 11:45 PM I woke from sleeping with my right arm (from my elbow down) completely numb. I shook my arm awake and went to the bathroom. But the tingling sensation wouldn’t go away and when I walked back to my bed, my bedroom started to spin. Sitting up helped me from feeling like passing out and trying to go back to sleep made the dizziness worse. I also felt nauseated.
I waited over an hour before waking up my husband because I didn’t want to make a big deal out of nothing. And as someone with one chronic illness (CVID) I knew the drill of going to see doctors only to be told nothing is wrong and that I’m over reacting. It was how I was treated almost 20 years ago before I was finally diagnosed with my immune deficiency.
While I was waiting on whether I should wake my husband up from sleeping, I did what any respectable person does in this situation. I went to Webmd.com to find answers. And low and behold, was one that was staring at me with prominence, Multiple Sclerosis (MS). I had a few friends with MS, but I never really gave it much thought that I too could have a neurological condition, but with my symptoms not going away, I knew something was wrong.
I remember thinking back a few weeks ago and hearing Selma Blair’s story of her journey to being diagnosed with MS, and what that looked like for her. I began reading other articles on MS and looking about what it might mean for someone like me. Her picture kept popping up as I searched for more information. Seeing the support and multitude of information out there made me realize that even if I was scared and felt alone in what I was experiencing, I didn’t have to put off finding out what was wrong.
I eventually woke my husband up and off to the ER we went. Because I didn’t have any chest pain it took over 90-minutes for me to get a bed. That’s when I really started thinking I could have something like MS. Although the ER did get a CT scan (negative for clots) and EKG (to rule out heart attack), and some blood work (all normal) one theme came central; Multiple Sclerosis. I was encouraged to see my primary doctor early Monday and to follow up with my oncologist before my IVIG infusion later that day.
I saw the Nurse Practitioner on Monday morning and she ordered another round of blood tests for magnesium and vitamin B & D. All three came back normal. She also did a reflex test on my elbows (no response) and on my wrist (delayed response). She didn’t test my knees. But ordered an MRI for further testing for MS.
Now, the insurance we have always picks a fight with expensive procedures and I was anticipating that they would deny the request, just like they did 15 years ago when I was being tested for Meniere’s Disease due to excessive dizziness, tinnitus and feeling fullness in the ears. But I was denied an MRI back then and for sure thought it’d be denied again.
However, within a few hours, the MRI clinic called me to see when I was available for the test. And so, I’ve set up the test. And now I’m in the hurry up and wait camp. I’m not sure if I have MS, but I am so grateful for the current climate in the medical field of helping patients instead of turning them away. When I was struggling in my 20s before I was told I had CVID I was told I was too healthy to be sick. And largely ignored and put on a variety of medications for symptoms. I’m glad that this time, the doctors seem to be concerned.
I’m ready for whatever journey is in front of me. I have had to navigate this before, and now I’m more knowledgeable and ready for the challenges that may come from this journey towards finding answers.