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New member
Apr 8, 2019
Learn about ALS
Good evening. After reading the stickies, I am still left with some questions. Here’s where I am at—

1. I have had body-wide twitching for about 6 weeks. It seems to be mostly in my legs now, with some in my face , back, and arms (not often). The twitching occurs on both sides. Some days it’s more on one side, then the next day it could be more on the other side. I have read that it’s more worrisome if the twitching moves up your body. I feel this could be my case. I feel like it’s less in my feet and calves than what it had been. Any insight into that?

2. When I fall asleep, I notice my legs, arms, and fingers jerking around. This also happens as I wake up and try to fall back to sleep. There are times when I wake up and I have internal like shaking in my body. Sometimes both of my arms have fallen asleep. Could this be anxiety or a possible symptom of ALS? I have not had a good night of sleep in quite some time.

3. I have a hoarse voice and a small cough, but it comes and goes. Would that occur with ALS?

4. I have been to my family doctor and a neurologist. They both said they had no concerns on my clinical exam. I never asked if I should be thinking about ALS. The neuro said she wanted to order a mri of my brain and an EMG. Of course, these are 3 more weeks away.

5. Since my neuro appointment, I have noticed I have some indentions on the top of my hands, but they are on both hands. Would I have atrophy in both hands at the same time? I can still button buttons, zip coats, etc. I feel a bit more clumsy on one side versus the other. Is this concerning?

6. I know I’ve read that without clinical weakness, twitching means nothing. Would clinical weakness have presented to my neuro already or could it have been too early? Is there ever an obvious weakness before an inability to do something? She tested me walking on toes, heels, backwards with eyes closed, strength testing, and a lot of different things with my fingers.

I wish I had asked more questions regarding why she felt the need to do the mri and emg. I didn’t realize my appointment was over because I had been told I would meet with PA and then the neuro. I only met with the PA. She told me I could communicate with her via a patient portal and I have sent her a message asking why she thinks it’s nevessary to do the testing and if something from my exam worried her. I have not heard back from her in the past week, so that’s why I turned my attention here. This seems like a knowledgeable forum that is not keen on enhancing fear and anxiety. I would appreciate any thoughts on where I’m at and if I am valid in having any concerns regarding ALS.
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