Hi all- curious what your progression has been like with PLS? It’s hard to get a clear answer since it’s so variable. My mother is currently in year 2 of symptoms. Started in legs, then trunk, arms, hands, now in her shoulders and neck. She has begun having uncontrollable crying spells which the neurologist said signals bulbar involvement. She has a lot of fatigue and confusion as well. He said speech and swallowing would likely be next and I’m wondering what kind of timeline to expect. Is it even possible to say or just wait and see? She is being seen at an ALS clinic.
PLS Progression?
- Thread starter Mt7705
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ShiftKicker
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Unfortunately it's variable, though it's expected to be slower progression than ALS. Usually a PLS diagnosis is provisional for a few years, as neurologists will be watching to see is lower motor issues develop in the interim, which changes the diagnosis. Has your mum had a recent breathing or sleep assessment?
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For uncontrollable crying, ask the clinic about a script for Nuedexta, which may also help some with other bulbar symptoms. There can be bulbar involvement in PLS while still remaining PLS. I agree that fatigue could relate to breathing, so yes, would ask about pulmonary function testing.
Ok I will check on this. She’s starting to have a raspy voice as well that I’m assuming is related. I was going to suggest voice banking, but it sounds like a big project and I’m not sure she’s up for it.
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