Pattern of progression

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Krismn

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I’ve read some of the discussions regarding rate of progression, but have been wondering about differences in pattern of progression. As I’ve read with limb onset, it seems most people experience asymmetric weakness spreading to one limb at a time. I was diagnosed in June of 2020. At that time, my symptoms were in all four limbs and the weakness ( for the most part) was symmetrical. As my weakness has progressed, it continues to be symmetrical for both arms and legs. Im going to ask about this at my next appt, but was wondering if anyone else has experienced this type of progression. My speech isn’t affected, but my breathing has been mildly affected.
Thank you!
 

Nikki J

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I think you are unusual. I wonder how many here share your experience. In fact there is guide that ALS experts developed for pcps and others of when to refer for urgent ALS evaluation and on it one of the things they said was against it being ALS was symmetric weakness. there were lots of things listed of course and the first part was clinical weakness atrophy and abnormal reflexes then there were two sections one was increasing suspicion ( FALS history was one) and the decreasing included the weakness being symmetrical. Of course the last two categories were not absolutes as your case demonstrates but it does indicate the experts must not see much symmetrical onset.

personally all my family have had one sided onset and so far everyone maintained some minimal movement in the last limb affected though no one chose to be vented. Everyone also started on their dominant side
 

lgelb

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The flail arm and flail leg subtypes, for two, are symmetrical. Loss of function is often noticed in one limb first, so it's said to be asymmetrical from a technical perspective, but often others follow swiftly.

I'm presuming that more symmetrical/four-limb illnesses like myopathies were ruled out, and your progression has seemingly been pretty rapid so that could play in as well. But just as an example, there was never any moment where my husband had any strength difference between his R and L legs. His ability to move one finger on his dominant hand lasted only weeks past his loss of the other one.

On the other hand, though he lost all extremity movement years before death, and was on 24/7 BiPAP his last year, he was able to talk and eat in limited fashion straight through. That may reflect that another disease (Marfan) affected his lungs years before ALS.

I believe there is more heterogeneity in onset and progression than commonly acknowledged, an artifact of episodic measurement with a few clinic visits annually, featuring rudimentary strength tests. This may be coupled with little zest on either the P/CALS or clinical side, except in research or as required for equipment orders, for drilling down into the order and speed of the losses.
 

Fusia

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The first symptom I noticed was decreasing function in my left hand. By the time I was diagnosed one year later, I was noticing lack of function it's in my right hand. So, it was definitely asymmetric at that point. However, I feel like the loss of muscles in my back and my legs has been more symmetrical - I seem to be losing capabilities in both legs about evenly. I was expecting that my right leg would've been much weaker at this point than my left, but that does not seem to be the case…
 

KevinM

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That is a very good question, Kris, and one I have pondered quite a bit myself. Although my clinical weakness started in my left tricep, I feel slowly progressing weakness in all limbs. I attribute that, as Fusia alluded, to slowly weakening lower back and shoulder muscles, which would contribute to the feeling of symmetrical weakness.

I also agree wholeheartedly with Laurie’s comment re: more heterogeneity in onset and progression than acknowledged. Symptom onset in particular seems to have a number of varieties that precede functional failure, in some cases occurring months or even a year or more before clinical weakness occurs. While most cases do present first with weakness (or bulbar symptoms), I would guess between 10–20% don’t fall into that category. Kevin
 
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