ColleenMarie
Member
- Joined
- Jan 5, 2022
- Messages
- 22
- Reason
- PALS
- Diagnosis
- 12/2021
- Country
- US
- State
- NC
- City
- Cary
Hello Everyone. A bit of an update and thank you for your generous thoughts / advice. I did see an ALS specialist today which was a relief. They are sending out my bloodwork to check for other issues. The Doctor felt that I could have Bulbar ALS and it may be slightly slow in progression. I am supposed to go back for a follow up and of course they ought to know more after my bloodwork results which may be done in a few days.
These are the comments he left.
61 y.o. woman with 8-10 months of progressive dysarthria but no dysphagia or other weakness. EMG was reportedly normal, MRI brain unremarkable. On exam today, patient's speech was slightly spastic but clear and understandable, no identifiable weakness or fasciculations but did have 3+ reflexes throughout including jaw jerk. Possible causes include upper motor neuron bulbar-onset ALS, PLS or stroke not seen on MRI. Will also need to check labs to rule out nutritional, infectious or autoimmune causes.
I am not sure what 3+ reflexes throughout including jaw jerk meant and only read this now that I am home?
How common is slow progression Bulbar ALS so I am not missing anything. My fear is that time is precious and I am either too stricken with anxiety to notice what changes or proactively doing something of my own to address this with clarity. For those of you who have experience with Bulbar ALS - how do you best monitor your progression? I am trying to be healthy mentally and live fully, support my family who need me but I am terrified. Having lost a friend to ALS, my mind is already in an anguished state remembering how hard it was for her and her family. Most people in my life refuse to talk about this with me. They think that if I am not falling or dropping something this is not ALS.
Any feedback is truly appreciated. I know everyone's time is precious so please know that words are not enough to express my gratitude. I feel very alone but having this forum has been about all the comfort out there I have had.
These are the comments he left.
61 y.o. woman with 8-10 months of progressive dysarthria but no dysphagia or other weakness. EMG was reportedly normal, MRI brain unremarkable. On exam today, patient's speech was slightly spastic but clear and understandable, no identifiable weakness or fasciculations but did have 3+ reflexes throughout including jaw jerk. Possible causes include upper motor neuron bulbar-onset ALS, PLS or stroke not seen on MRI. Will also need to check labs to rule out nutritional, infectious or autoimmune causes.
I am not sure what 3+ reflexes throughout including jaw jerk meant and only read this now that I am home?
How common is slow progression Bulbar ALS so I am not missing anything. My fear is that time is precious and I am either too stricken with anxiety to notice what changes or proactively doing something of my own to address this with clarity. For those of you who have experience with Bulbar ALS - how do you best monitor your progression? I am trying to be healthy mentally and live fully, support my family who need me but I am terrified. Having lost a friend to ALS, my mind is already in an anguished state remembering how hard it was for her and her family. Most people in my life refuse to talk about this with me. They think that if I am not falling or dropping something this is not ALS.
Any feedback is truly appreciated. I know everyone's time is precious so please know that words are not enough to express my gratitude. I feel very alone but having this forum has been about all the comfort out there I have had.