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Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
In February 2020, I started having weakness, numbness, burning, and pain on both sides of my body, starting with my feet but rapidly progressing to the rest of my body. When I would bend my head to look down, it would cause electrical vibrations down my body. My balance and coordination were completely off…
I went to the ER twice before my provider ordered an MRI. The first time I went was because my symptoms rapidly worsened and I couldn’t even hold a razor to shave; it was affecting my dexterity. They did minimal tests to make sure I wasn’t dying and sent me home but wanted me to follow up with a neurologist. I let my provider know, but she was slow to respond. This was when Covid was taking over our lives and we couldn’t even see our health providers in person. Everything was telehealth.
The second time I went to the ER was because I had a squeezing sensation like a tight corset squeezing my whole torso area. The ER did the same minimal testing and made sure my heart was okay but wanted me to follow up with an MRI and a neurologist. This prompted my provider to order an MRI and refer me to a neurologist. I had my MRI done while I waited for my telehealth appointment.
All the while, I was getting weaker and weaker, losing sensation in my legs. It was difficult to walk. I couldn’t feel my feet. My legs felt like giving out after a few steps. My legs felt like jello like I had muscle failure from working out too hard. My torso and arms were continually contracting and tensing up.
Finally in May, I had my telehealth appointment with the neurologist from the Denver VA. The MRI showed transverse myelitis. I had inflammation on both sides of my spine from top to bottom. I told him about my symptoms and he could see my tremors when I lifted my hands.
He insisted that I go to the hospital right away to be admitted. I was put on a high dosage of IV steroids for five days and had many tests done. They set me up with a new provider at the spinal cord clinic.
I was diagnosed with a rare autoimmune disease called neuromyelitis optica spectrum disorder (NMOSD) or Devic’s disease.
“(NMO) is a central nervous system disorder that causes inflammation in nerves of the eye and the spinal cord. Neuromyelitis optica can cause blindness in one or both eyes, weakness or paralysis in the legs or arms, and painful spasms. It also can cause loss of sensation, uncontrollable vomiting and hiccups, and bladder or bowel problems from spinal cord damage. Children can have confusion, seizures or comas.”
Mayo Clinc
Thankfully my sight wasn’t affected and I slowly restored and regained my ability to move normally.
One of the first things I read about this disease was that it had a 5-year survival rate. Yikes! However, the advances in the research about NMOSD and treatments to prevent a new attack have changed that alarming statistic a great deal.
With the right treatment, a person can live a relatively normal life if their previous attack(s) didn’t cause permanent disability. I have an infusion of Rituximab, an immune suppressant, every 6 months. I will continue that for the rest of my life. That’s a small price to pay considering the alternative. I sometimes have flare-ups of my residual symptoms especially when I’m feeling stressed, sick, or tired.
I’m incredibly thankful for my progress, though. This past summer, with the encouragement of some really good friends, I hiked up a very steep mountain to the elevation of 12,260′ to one of the most beautiful lakes I’ve seen called Ice Lake near Silverton, Colorado.
We all have our crosses to bear. I will always have this rare disease, but it is something I can handle. It does not and will not define me.
Much love to you all – Jacqueline
