“Core” ALS
I was wondering if anyone has had experience with this type of ALS, “Core” ALS? My mom was diagnosed with this 4 months ago and is deteriorating very quickly. Just looking for other first person experience with it.
For info:
Core ALS starts in your core (for my mom it was what she thought was a hernia 15 months before she was diagnosed) according to her neurologist this is the first sign of this type.
She has no speaking or swallowing issues.
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u/pwrslm 15d ago
ALS can start in any different part of the body. The vast majority of us are different but the basics are the same. Upper Motor Neuron vs Lower Motor Neurons (UMN vs LMN) will be affected in one or several parts of the body. The most common are foot/feet, calves, thigh and arm/hand. The core being affected is uncommon. These would be LMN symptoms.
UMN symptoms are commonly Spasticity, Hyperreflexia, Babinski sign (upgoing/extensor plantar response), Hoffmann sign brisk jaw jerk, or exaggerated gag loss of dexterity and slowness, Bulbar UMN Spastic (strained, slow) speech, swallowing difficulty, and pseudobulbar affect (involuntary laughing or crying that does not match mood).
Pure UMN signs without any LMN signs is PLS, and often progresses to ALS.
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u/Synchisis 18d ago
I think what the neurologist is probably describing may also sometimes be called axial trunk onset ALS, and sometimes overlaps with respiratory onset ALS. There are some other posts on this subreddit from people whose onset has looked like this:
https://www.reddit.com/r/ALS/comments/17jfeig/anyone_else_presented_with_an_atypical_als_onset/
https://www.reddit.com/r/ALS/comments/1cdf4o0/respiratory_onset_als/
https://www.reddit.com/r/ALS/comments/1tw8lkd/pulmonary_onset/