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Amanda,
Thank you for asking this question. My path to an accurate diagnosis took about 14 months.
In October 2017, I began to notice that during my daily walks on a paved walking trail my right toe box seemed to be hitting the ground with a very slight flop. I thought it might be the running shoes I was wearing so I didn’t think too much of it. But in late December 2017, I tried to stand on tiptoe to reach something and I could not go up on tiptoe on my right foot at all. This scared me so, of course, I immediately looked up my symptoms on the internet and found that weakness in one limb can be an early sign of ALS.
I had had arthroscopic surgery for a torn meniscus in 2014 and my knee surgeon had told me at the time that I would need a full knee replacement in one to ten years. Hoping that my foot weakness was a sign of my knee giving out, I got an appointment with my knee surgeon. He diagnosed the problem as a radiculopathy of the L5S1 nerve. “So it’s not ALS?” I asked. “No!” He said firmly. He referred me to a spine surgeon, and I had an MRI of the lumbar spine which clearly showed a compressed L5S1 nerve. I had spinal fusion surgery and a laminectomy at the end of March 2018.
A few days later, I noticed what seemed to be a cavity forming in my right hand between my thumb and index finger. I showed it to the spine surgeon’s PA at my four week check up. She told me not to worry about it and that my surgeon could look at it at the eight week check up. The surgeon acknowledged that there was muscle atrophy but didn’t think I needed to see a neurologist. Finally, I scheduled an EMG myself in June, 2018. The physiatrist who administered the EMG acknowledged that the findings could be consistent with MND but felt strongly that my muscle atrophy was due to carpal tunnel and Ulnar nerve compression.
I then saw a highly regarded hand surgeon who studied the EMG and my C-spine MRI from February 2018 and X-rays of my hands. He diagnosed carpal tunnel compression in both wrists and Ulnar nerve compression in the right elbow. I had surgery on my right arm on August 7, 2018 and on my left wrist on October 22, 2018.
Meanwhile, I continued to go to PT regularly twice a week, but my right leg foot drop did not improve. My lumbar spine muscle strength improved steadily but was still far from pre-surgery strength. My physical therapists continued to assure me that I was making very good progress. When I told them about my lingering fear that I might have ALS, they dismissed it. When I met with my hand surgeon for a consult in January, and expressed concerns about loss of fine motor control, he suggested that there could be involvement at the cervical spine level but otherwise assured me that things were going “as expected.”
My daughter, Laura, a physician, had been urging me to see a neurologist for months so finally after a consult with my spine surgeon on Jan. 29, 2019, who found weakness in my left foot but no signs of nerve compression, I made an appointment with a neurologist in my city and also one with a neuromuscular specialist at the Cleveland Clinic. The local neurologist examined me, ordered blood work, a C-spine MRI and an EMG. He told me that I did not have an MND even though the EMG he had ordered for me showed “significantly abnormal” results. He believed that the severe spinal stenosis in my cervical spine was causing nerve compression with resulting weakness in my left foot.
Finally, approximately 18 months after I first noticed a change in my right foot, I was thoroughly examined and all of my tests results evaluated by Drs. Steven Shook and Erik Pioro at the Cleveland Clinic. Their joint diagnosis: ALS.
I’ve wondered, of course, why none of the very fine and highly rated medical professionals and physical therapists I saw for over a year ever suspected ALS and since my diagnosis, I’ve wondered whether or not I really needed to have the carpal tunnel and Ulnar nerve surgeries. The spine surgery was probably indicated because I do have a lot of age related arthritis in my spine. I imagine that it’s not uncommon for several conditions to be present along with ALS.
I would be interested to hear from others who may have had perhaps unnecessary surgeries for conditions that may really have had ALS as the underlying cause.
Thank you for reading my long story!