• Lowell Stewart posted an update 1 year, 10 months ago

    In reading the article about delayed diagnosis I’m prompted to tell my story. I had a bulbar onset that was so minimal that when I had my annual physical in April 2018 I forgot to mention it to my PCP. In October 2018 when I had continuing problems with speech, and fasciculations in my thighs, I contacted the ALS Center and saw a neurologist who didn’t find any clinical signs of ALS. In March 2019, after a brain MRI, I saw another neurologist who also didn’t detect any clinical signs of ALS. A few days later I saw an ENT who noticed that I had fasciculations of my tongue and he suspected a neurological cause. Finally, in June 2019 I saw the first neurologist I’d seen and at that visit he saw clinical signs of ALS which was confirmed three days later by EMG and nerve velocity testing.

    I wonder if I had reported by speech problem to my PCP whether she would have sent me to the ENT and I wonder if that early on he would have found that I had tongue fasciculatios and was involving my false vocal cords in a labored effort to speak. So my conclusion is that it’s not so easy to identify clinical symptoms of ALS and at least in my case I don’t see any advantage to early diagnosis since there’s no effective treatment and since such a diagnosis would have conflicted with my son’s wedding and a vacation trip to England.

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