enidoreilley
New member
- Joined
- Mar 6, 2018
- Messages
- 8
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- PA
- City
- Philadelphia
To begin with, I have seen a neuro. I have diagnosed IIH (high intracranial pressure) and already had a follow up appointment where I mentioned these new symptoms. I am awaiting CPK levels.
About 1 week ago my lip froze. I couldn't move it - it was just my upper lip and it drooped down and hung like that for about 30 minutes. Gradually I got movement back in it and that exact episode hasn't happened since. Leading up to that happening I had been drinking wine with a friend and we took a brisk walk together. She was concerned and wanted to call 911 because she thought I was having a stroke, but I had no other stroke symptoms. I mention the walk because I have noticed that my lip starts to feel a little numb when I have walked since. I haven't been to the gym lately, so my only exercise has been in the cold, so I don't really know if it is cold or exercise related (both of these, I understand, point away from ALS)
This week I have been getting tired eating. Like, my tongue feels like it is working too hard.
I have ongoing, nearly constant lip tremors. They are slight, but definitely observable.
I have also been losing weight without doing anything to try to lose weight. I am very overweight, so at first this was fun and welcome, but in light of the other odd things going on, I am somewhat concerned.
Otherwise, my speech is normal, albeit with clumsy lips, I see no tremors in my tongue, and have no difficulty swallowing.
Does any of this track with ALS? I am very appreciative for any guidance anyone can give me. I know I should just relax and wait for the doctor to direct me, but I have been a little bit shaken by all of this.
About 1 week ago my lip froze. I couldn't move it - it was just my upper lip and it drooped down and hung like that for about 30 minutes. Gradually I got movement back in it and that exact episode hasn't happened since. Leading up to that happening I had been drinking wine with a friend and we took a brisk walk together. She was concerned and wanted to call 911 because she thought I was having a stroke, but I had no other stroke symptoms. I mention the walk because I have noticed that my lip starts to feel a little numb when I have walked since. I haven't been to the gym lately, so my only exercise has been in the cold, so I don't really know if it is cold or exercise related (both of these, I understand, point away from ALS)
This week I have been getting tired eating. Like, my tongue feels like it is working too hard.
I have ongoing, nearly constant lip tremors. They are slight, but definitely observable.
I have also been losing weight without doing anything to try to lose weight. I am very overweight, so at first this was fun and welcome, but in light of the other odd things going on, I am somewhat concerned.
Otherwise, my speech is normal, albeit with clumsy lips, I see no tremors in my tongue, and have no difficulty swallowing.
Does any of this track with ALS? I am very appreciative for any guidance anyone can give me. I know I should just relax and wait for the doctor to direct me, but I have been a little bit shaken by all of this.
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