Published February 4, 2020
THE VIEW FROM MY SEAT
Sometimes I wonder: What if?
By Ernie Williamson / The Bulletin
Eight years ago this month I was diagnosed with transverse myelitis, a rare disorder that left me unable to walk.
Although resigned to life in a wheelchair, on sleepless nights I replay in my mind how I got here. I am burdened with “what ifs” about the treatment leading up to my diagnosis.
Could I have limited the effects of this disorder if I had described my symptoms better, asked more questions and demanded quicker appointments?
What if I had gone to a different hospital or found the right doctor sooner?
I suspect almost all of us with disabling issues ask ourselves these types of questions.
Transverse myelitis is a neurological disorder caused by inflammation of the spinal cord. The inflammation disrupts communication between nerves in the spinal cord and the rest of the body.
The disorder often develops after a viral or bacterial infection attacks the spinal cord. Sometimes the infection causes a derangement of the immune system, which leads to an autoimmune attack on the cord rather than a direct attack by the organism.
High-dose steroids are the first line of treatment. They reduce spinal inflammation.
It took three weeks to get a diagnosis and my first steroids. I don’t blame anyone – after all there are only 1,500 new cases yearly - but I do wonder if we missed opportunities to get a faster diagnosis and a better outcome.
Here is what happened:
Friday, Feb. 10, 2012: I left work with that malaise you feel when the flu is lurking. Prior to this I was the picture of health, but I had overlooked one thing: a flu shot.
Saturday, Feb 11: Flu strikes.
Sunday, Feb. 12: Obviously not 24-hour flu. Still sick.
Monday, Feb. 13 and Tuesday, Feb. 14: I awakened Monday night dripping in sweat. Should I have gone to the doctor immediately? We canceled Valentine’s Day dinner. I was soaked again Tuesday night.
Wednesday, Feb. 15: I went to my primary care physician. I had pneumonia, too. He prescribed an antibiotic and rehydrated me. I went home. Did we miss something?
Thursday, Feb. 16: Still sick. I felt wobbly walking but didn’t give it much thought. I figured it was from not eating. What if I had gone back to the doctor and described the weakness?
Saturday, Feb. 18: Still feeling badly, I checked into a close-by regional hospital. Would I have fared better going to a hospital in the medical center? Perhaps, but I thought it was only the flu!
Sunday, Feb. 19: Felt better in the hospital after being given new medicines.
Monday, Feb. 2: Told hospital doctor I was feeling better, but I had developed numbness in my feet and groin. “That doesn’t sound good,” he said. A neurologist ordered a spinal cord MRI.
Tuesday, Feb. 21: MRI showed no abnormalities. Another neurologist ordered a brain MRI.
Wednesday. 22: Brain MRI showed nothing abnormal. After a discussion with doctors, I was discharged with instructions to come back if things didn’t clear up. I wonder if I hadn’t adequately described my symptoms? I wonder if the doctors hadn’t asked the right questions or done the right tests? Did they know about transverse myelitis?
Thursday, Feb. 23: Back home, walking was getting harder.
Friday Feb 24: I returned to my primary care physician. I described what had happened since seeing him earlier. He thought I had a pinched nerve. He made me an appointment with a neurosurgeon for Monday.
Saturday, Feb. 25 and Sunday, Feb. 26: At home, my legs weakened. I decided not to return to the hospital since it was the weekend and I already had the appointment Monday with the neurosurgeon. What if I had gone to the hospital?
Monday, Feb. 27: I needed a walker to get to the neurosurgeon. The doctor reviewed my MRIs. I was told there was nothing surgery could fix. Then the words I will never forget: You may never walk again, they said. Stunned, I was told to see a neurologist. I couldn’t get an appointment with a neurologist until Wednesday. What if I had pressured them for an immediate appointment? Was it already too late?
Tuesday, Feb. 28: Legs continued to weaken.
Wednesday, Feb 29: I needed a wheelchair to get to the neurologist.
The neurologist ordered more tests but immediately put me on high-dose steroids. Too late. Almost three weeks after first getting sick, the damage was done and eight years of physical therapy and “Hail Mary” treatments haven’t been able to reverse it.
From my wheelchair, I wonder.
(Ernie Williamson welcomes reader input. Please contact Ernie at email@example.com. Or, send letters in care of The Bulletin, PO Box 2426, Angleton, TX. 77516)