ALS News Today Forums Forums Living With ALS Were you misdiagnosed?

  • Johnny5

    June 24, 2024 at 8:26 pm

    I’ve had a lumbar disc problem since I was 20. It got much worse over the years, but I clenched my teeth and bore it. After 30+ years, it was getting really bad. I went to physical therapy, and the therapist gave me 1 exercise. That exercise caused damage to my nerves, and the therapist ignored the symptoms. So they drug their feet, but after nine months, they got me into surgery for a 4-level spinal fusion. Post-surgery, I had a foot drop. Six months later, I was diagnosed with benign fasciculation syndrome and given an AFO. That was my first misdiagnosis.
    The second came a few years later as the foot drop worsened, and I graduated to a KAFO (knee-ankle-foot orthosis). I was referred to a Neurologist again, and they started pumping pills at me, thinking that it was a neuro issue pills would solve. Wrong again.
    The third misdiagnosis was that my cervical spine had a problem (degenerative cervical myelopathy). There was little to no room for the spinal fluid to get through because all of the years with my back problem, I had three curves in my spine and had been diagnosed with scoliosis. The doctor said it would also explain the problem with muscle loss in my left arm. They told me I did not have ALS, and I was ecstatic! So, after a five-level fusion in my neck, I would be cured of this. Wrong again.
    There was a fourth, but I cannot recall what it was. They are looking at FTD now because I forget a lot of things. I will remember later if I don’t forget again.
    The final straw was after a brain CT. The Neurologists noted that the corticospinal tract had problems, and I was finally given a preliminary diagnosis of possible ALS. It took another two years before I got a confirmation (second) diagnosis. Throughout the six years that this took, I went through numerous blood tests, urine tests, a muscle biopsy, and eight NCV/EMGs (all abnormal and showing progression).

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