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Distinguished member
Aug 16, 2007
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.
Sorry to hear that things are not better. I too have fasics that come and go- but from what I have heard that is not common with als
Do you think maybe the Neurontin is causing your new sleepiness, since you recently started it and it is a side effect? I know with the fatigue, or should I say exhaustion, that I get, it's not the kind where my eyes would close and I could sleep, it's more like the muscles and my body can't move another second. I've had pals say it is the same with them, not sleepiness, but more a body fatigue. Also, with my myopathy I have had the fascic's decrease to the point of a few a day, but recently they have come back. This is helpful info because it goes to show that illnesses that mimic als, such as myopathy and polymyositis, have the same symptoms. So, stay happy for now!
Mama, sorry to hear about your discomfort. Damn this illness! It is kinda hard to keep up with this forum and its members. If you miss out one day it throws you way off. I paid my bills yesterday, and went grocery shopping, and there went my day. I got on the net way way too late. Ater midnite! Anyways mama, when were you diagnosed'ed, or you haven't been yet? If you have, do you have the peg yet? Sorry for my questions.

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