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How old were you when you were first diagnosed?
Do you think your age had anything to do with how quickly you were or were not diagnosed?
Do you believe you were taken seriously on your journey to diagnosis? -
24 Replies
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I was 59… the “average” age for symptom onset. At the time (14 yrs ago) I didn’t sense any age-ism from my doctors. But I think other forum members might have experienced it. Let us know how you felt and what age you were.
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My husband was 64. We never felt that his age had anything to do with diagnostics and care.
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I was 74 and don’t believe age had anything to do with it.
John
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I was 44. Don’t think it was age related
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53 and my deceased syster 44
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Diagnosed at 60 first noticed it at 59
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I was 68 and I dont think age had any bearing on my diagnosis.
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44 and recently diagnosed. I don’t. Think age have anything to do with it
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I was 75 when symptoms started and that was slurring my words, at 76 I was finally diagnosed at the ASL clinic in Atlanta. I am now 77 and cannot speak, eat barely swallow. I have a feeding tube. I can no longer hold my head up straight, but I can walk and use my arms..
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I was 53 when first diagnosed four years ago. I don’t think age had anything to do with my diagnosis.
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My son was 30 when he was diagnosed this past May. He’s had symptoms for a few years. How can someone so young get this horrific disease?
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I had fleeting symptoms for years, nearly a decade, prior to being diagnosed at 55. I don’t believe that age was a factor in my case.
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diagnosed at age 76 (March 2023)
And absolutely; because I was OLD, they assumed I was just out of shape.
Just need to exercise more.
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I was 55 when I was officially diagnosed and 54 when my first symptom showed up with weakness in my right foot. Thought it was due to a fall while playing competitive soccer and didn’t go to a doctor. Six months later I was at Mayo Clinic and within a short period of time they gave me the news.
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I was 42 but symptoms came about when I was 40. That was 30 years ago thank goodness. Everyone please have the best New Years as possible.
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54 years old. July 14, 2020
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I was 64 (2017)when I was diagnosed with PLS (primary lateral sclerosis) a subset that is more rare than ALS but has a lifespan of about 20 years. It affects only upper motor neurons. Looking back I had symptoms in 2013, but I thought my leg weakness was because of knee problems and knee replacements in 2014. In 2016 fell and broke ankle. First saw neurologist in 2017 and Mayo Clinic officially confirmed diagnosis.
My diagnosis changed to ALS in Spring 2024 at age 71 when I started to have respiratory problems requiring more support with bipap machine and cough assist machine
Do not think age had anything to do with diagnosis.
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Age 54 although symptoms were there before all be it subtle.
Was not until I moved into the City I live in now that a Doctor picked up on things following a well man check
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I believe it might have, but I believe my doctor had a good idea about what was wrong at the time. The first symptoms appeared in my left ankle. I assumed that is was an old sports injury showing up (I sprained that ankle a couple of times in high school and I assumed it may have been from those injuries.. But I was confused somewhat by my Doctor’s response. He sent me to a specialist who did the tests on my ankle. The specialist referred me to a specialist in another town who verified that I had ALS. ( He is one of the most well respected experts in the country on ALS). I had just assumed in was that old set of injuries that reappeared after I reached my 60’s.
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I had speech problems in 2017. I started seeing a Neurologist in 2018 and it took her 2 years to conclude I had ALS. She appeared to me to be inexperienced. I was 65 when I was diagnosed. Later I’ve read somewhere the average time to diagnose is 2 years. I started biting my tongue frequently while eating in 2013, when I was 57. I think that was an early sign for me that I had ALS., I don’t think my Neurologist had an age bias towards me. After my confirming EMG she told me to get my Will in order. She was a real inspiration! NOT.
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61 but noticed symptoms 2 years prior
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I was 66 when I was diagnosed…. Speech problems when I was 65 started…..Now speech and swallowing and stamina are my sysmptoms
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I was 49 when diagnosed after having a year of rt foot weakness. My neurologist said I’m definitely on the younger side.
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I was diagnosed Feb. 2024 at age 78. My symptoms were twitching in the arms and increased fatigue. At the clinics at Methodist Hospital in Houston , I meet people of all ages who have ALS. The clinic patients have many different symptoms, hands, arms , voice, swallowing, legs etc. There isn’t a simple way to describe ALS, except to say there is nerve and muscle degeneration somewhere in the body. I am currently taking Rilusole and Radical. A year after the diagnosis I am still walking 5,000 steps a day and doing a daily exercise routine. Stephen Hawking was diagnosed at age 21. My advice is keep moving while you can and maybe they will come up with a cure. We see all these drug commercials on TV now with people dancing and smiling. Maybe Big Pharma can come up with a dancing drug for ALS.
The drug could be called ALS well that ends well.
Rik Thornberg
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