mamaoftwo
Distinguished member
- Joined
- Aug 16, 2007
- Messages
- 224
- Reason
- Other
- Country
- US
- State
- NY
- City
- larchmont
No news yet from here. My neuro appointment is still October so I continue to wait. Meantime, lots of weird symptom stuff happening. I now feel like aside from my obvious hoarseness, I cannot hear my voice very well when I talk. Strange thing but my voice sounds muffled to me. I am scared that the vocal cord paralysis has spread to the left side as well now. I have a lot of phlegm problems, having to clear my throat constantly and coughing. The pain and atrophy continues as does the leg cramping. I have also started to feel this incredible fatigue, especially early in the day - I literally feel like I have been hit by a truck. I am stiff all over and exhausted. And by late afternoon, my eyes are closing and I struggle to stay awake. But here is the strangest thing - the fasics are defintely decreasing in frequency and intensity. I am sure it is because of the neurontin and in fact, the neuro did tell me that was a distinct possibility. I dont know if its a good sign but it certainly makes me able to focus on other things a little better instead of those constant reminders that something is so wrong. I still have them in my hands, feet and my chin. But the ones in my tongue have decreased to the point where maybe I have one or two a day. I have other random ones all over too but not nearly so many.
I have read that some PALS do not feel their fasics at all and they only show up in EMG. Some seem to have them constantly. So I'm curious what this could mean. VMD, I recall you also had a decrease in fascis at one point. Did yours come back?
At any rate, nothing else to report here. I still check in and read when I can but trying not to make this my sole focus. After all as Cindy says, if its ALS, then I might as well try to enjoy what time I have now.
I have read that some PALS do not feel their fasics at all and they only show up in EMG. Some seem to have them constantly. So I'm curious what this could mean. VMD, I recall you also had a decrease in fascis at one point. Did yours come back?
At any rate, nothing else to report here. I still check in and read when I can but trying not to make this my sole focus. After all as Cindy says, if its ALS, then I might as well try to enjoy what time I have now.