Uncle Diagnosed - How Early Were Symtoms?

45gunslinger

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My uncle was recently diagnosed with ALS and in hindsight it seems there were signs from 5-7 years ago. Slurring speech (3 years ago) A noticeable change in mood (10 years ago), significant alcohol tolerance decrease (11 years ago), unusual stumbles, etc. He even swore there was something wrong with him years ago but passed his physical with no issues.

My question (s) are is there typically much less noticeable signs years prior to progression that are only realized in hindsight? If someone experiences this is it more likely to be a slower progression of als? Lastly, does als typically progress at a consistent pace (slow or fast)?

I realize everyone is different, but I’m interested if anyone else experienced something similar
 
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lgelb

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I'm sorry to hear about your uncle.

Typically, ALS goes fast/slow/fast, but not always. Some people do have a very delayed onset. It is possible that progression overall will be slower in the sense that survival is longer. What category your uncle falls into, I cannot say, but onset over a decade ago would be extremely unusual.

To make sure there is nothing more treatable (a small stroke/bleed, longstanding infection and other possibilities come to mind), we always recommend a second opinion at a neuromuscular center.

Best,
Laurie
 

Sonne

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My symptoms started 10 years ago with difficulty swallowing, some stumlbing and noticed dropping of things and minor problems with speech. Two years ago I was diagnosed with ALS and I have no doubt that is a correct diagnosis.

I am still walking in my apartment although it is getting increasingly difficult to do so. Speech and swallowing it getting quite difficult and I drop things constantly, which to me is the most irriating aspect for me as I continue to try to use my hands with sewing and painting. I've adapted some coughing and swallowing responses that to date have been help to stand off choking but later its been not as sucessful as it was a year ago. I get most of my twitching and contractions later in the day but not exclusive to.
I believe Igelb is correct in saying that the progression of the disease is determined only after death, as everyone develops and progress differently. I sometimes wonder if one is more in tune with ones body we then notice these symptoms before what others may, but who knows. We are all different and progress as we do. It is what it is and we can only do what we can each day.
 

KimT

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I agree. I think some of us are hyper-aware of changes in our bodies. As a runner, I thought it was odd that I sprained an ankle in 2012. I recovered from it but my left leg always felt different. I fell on a run in 2013 and that was the last of my running. Even when I started getting cramps and twitches in my left foot and leg in 2014, ALS wasn't even on my radar. My local neurologist, who treated me for a car accident and migraines, suggested I go to Mayo in early 2014 but I put it off until December. I was still walking several miles a day but the EMG was classic for ALS. I didn't get diagnosed until late Summer of 2015 because I was still "strong" clinically but I definitely knew I was much weaker even though I continued to work out.

Everyone is different. I met a man who worked the first five years after his diagnosis and lived for 15 years with no feeding tube or vent.

I've seen others speed up or slow down.
 

Sonne

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Remeber Stephen Hawkins lived with ALS for 40 years and more.
 
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