What followed were lots of exams and tests including an MRI of my lower back and an evoked potential test. There was no ALS–nothing. Diagnosis: depression. “Oh honey, you just don’t want to move forward, now do you?” I was started on anti-depressants, scheduled for psychotherapy and presented with the idea of electroconvulsive therapy for severe depression.
At the same time, I started having problems with urination. It was a strain to urinate and then, because I could not empty, it would leak. Diagnosis: neurogenic bladder. Another lower back MRI that showed nothing. “Oh honey, a lot of middle aged women have problems with their bladder.” I also had numbness and tingling in my hands. “Oh honey, do you type at work? You’ve just got a little carpal tunnel.”
For the next 17 years, I continued to have difficulty walking, urinating and using my hands but never became completely paralyzed. I had lots of falls, lots of UTIs and waited to see if my symptoms turned into ALS or MS. One doctor suggested fibromyalgia, but the symptoms did not fit. They never changed for better or for worse. I changed careers to a job where I could sit more.
Then, in 2012, I went to an endocrinologist for an unrelated thyroid nodule. As I was leaving, he said, “why do you walk like that?” In 17 years of seeing doctors of every kind, no one had ever asked me that. He had my undivided attention. “Maybe fibromyalgia?” I said.
“No,” he answered. “It is something else. You need to see a neurologist. No, you need to see a smart neurologist.”