miss91
Active member
- Joined
- Jun 14, 2009
- Messages
- 61
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
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- City
- A City
Hi Everyone,
I posted the other day with some of my symptoms and fears of ALS. Again, I am so impressed with everyone dealing with ALS on this website, and the caregivers, and your ability to "go on" in spite of what is happening.
Basically, I'm just scared. I mentioned some of my symptoms the other day, including how one month ago I had nausea/exhaustion/diarrhea which turned into DEEP fatigue, 10 lb. weight loss, constant fasciculations all over, lump in throat, sometimes hoarse voice, weak feeling foot and fingers, etc. One month ago, I was dancing at a wedding and having a great time, so I don't understand how I can sit here miserable one month later.
The thing that has changed is, now I can actually SEE the foot atrophy in my toes. I felt a pain there two weeks ago, then noticed the toes felt weaker when I walk (terribly now). The feet look the same, but the toes on my right foot are obviously thinner. My shoe has felt loose on that foot for a few weeks but I didn't think anything of it. And last night at my son's baseball game, I found my "weak" pinky and ring finger wouldn't even hold the umbrella. My left hand has become dominant.
Another frightening occurence is the fact that I've been a TEETH GRINDER all my life, my back teeth are worn down to prove it. Now, I find myself waking up at night with my jaw totally slack, unable to shut for more than a minute. I had constant fasciculations in it the other day, now it's all loose and feels weak when I'm trying to sleep.
I went to my first appt with the neurologist today. He tested my reflexes, which he said seemed to be ok (my weak foot didn't do ANYTHING when he tested for Babinski). However I pointed out my spread out, weaker toes and he didn't say much, other than to schedule me for a 3-limb EMG and some other muscle test. He left the room then but not before he said, "Well the EMG will show us if it's ALS or not". Basically I left the room, and my husband called me, and I just started crying. I feel pathetic.
I am NOT trying to be a big baby or paranoid. However as I sit here I'm getting the same twitch I've had all day, in my thigh, and I am looking for any reason to think it's NOT ALS. However, the OBVIOUS wasting in my foot, the fasciculations, etc. make me realize there is no other answer to my constant decline other than ALS.
I just wanted to vent and let it out. I even bought 3 photo albums yesterday so I can make picture memory books for my boys, because I"m THAT SURE of what is going on with me. I'm just so scared and I'm sorry if I come off as a wimp but what else can I think?
I'm now thinking back, wondering if I had signs all along that I missed. I DID fall twice when I was dancing at the wedding, not to the floor, but I tripped. YES I've been tired for months.
THANK YOU for listening to me. I pray that I have the strength to be a normal parent to my kids, and a normal wife to my hubby, if I get the DX I'm so, so scared of. I'm a Christian and have been praying, but I can't seem to lose this fear. I pray God blesses every one of you taking the time to read this. If nothing else, I've started saying a prayer for each person as I read individual posts.
M
I posted the other day with some of my symptoms and fears of ALS. Again, I am so impressed with everyone dealing with ALS on this website, and the caregivers, and your ability to "go on" in spite of what is happening.
Basically, I'm just scared. I mentioned some of my symptoms the other day, including how one month ago I had nausea/exhaustion/diarrhea which turned into DEEP fatigue, 10 lb. weight loss, constant fasciculations all over, lump in throat, sometimes hoarse voice, weak feeling foot and fingers, etc. One month ago, I was dancing at a wedding and having a great time, so I don't understand how I can sit here miserable one month later.
The thing that has changed is, now I can actually SEE the foot atrophy in my toes. I felt a pain there two weeks ago, then noticed the toes felt weaker when I walk (terribly now). The feet look the same, but the toes on my right foot are obviously thinner. My shoe has felt loose on that foot for a few weeks but I didn't think anything of it. And last night at my son's baseball game, I found my "weak" pinky and ring finger wouldn't even hold the umbrella. My left hand has become dominant.
Another frightening occurence is the fact that I've been a TEETH GRINDER all my life, my back teeth are worn down to prove it. Now, I find myself waking up at night with my jaw totally slack, unable to shut for more than a minute. I had constant fasciculations in it the other day, now it's all loose and feels weak when I'm trying to sleep.
I went to my first appt with the neurologist today. He tested my reflexes, which he said seemed to be ok (my weak foot didn't do ANYTHING when he tested for Babinski). However I pointed out my spread out, weaker toes and he didn't say much, other than to schedule me for a 3-limb EMG and some other muscle test. He left the room then but not before he said, "Well the EMG will show us if it's ALS or not". Basically I left the room, and my husband called me, and I just started crying. I feel pathetic.
I am NOT trying to be a big baby or paranoid. However as I sit here I'm getting the same twitch I've had all day, in my thigh, and I am looking for any reason to think it's NOT ALS. However, the OBVIOUS wasting in my foot, the fasciculations, etc. make me realize there is no other answer to my constant decline other than ALS.
I just wanted to vent and let it out. I even bought 3 photo albums yesterday so I can make picture memory books for my boys, because I"m THAT SURE of what is going on with me. I'm just so scared and I'm sorry if I come off as a wimp but what else can I think?
I'm now thinking back, wondering if I had signs all along that I missed. I DID fall twice when I was dancing at the wedding, not to the floor, but I tripped. YES I've been tired for months.
THANK YOU for listening to me. I pray that I have the strength to be a normal parent to my kids, and a normal wife to my hubby, if I get the DX I'm so, so scared of. I'm a Christian and have been praying, but I can't seem to lose this fear. I pray God blesses every one of you taking the time to read this. If nothing else, I've started saying a prayer for each person as I read individual posts.
M