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iambeezer

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Jan 28, 2019
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Learn about ALS
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NJ
Background: I've seen PCP, I've Seen a Neurologist. I have been prescribed a blood test, and EEG and an EMG. The EMG is sort of on hold right now because we are having trouble finding a place that accepts my insurance.

I presented to the ER 3 days after Christmas with a pain in my head and weakness on my left side and twitching in my legs and both arms. Was tested for stroke, nothing found.

Went to Primary Dr. following week with twitching all over my body and sporadic jerks when at rest which kept me up. Was sent to a neurologist and for an mri.

With the Twitching all over my body, my calves, back, arms, back I went into Neuro's office with a clean MRI I had done about 2 weeks prior. I told her about the twitching and even though my muscles were twitching right in front of her, she said she didn't see it. She then did a reflex test on me and told me that she would have seen them then, even though my muscles were still twitching in front of her. She wrote down in her notes no fasciculations and sent me home with orders for blood work, and EEG and EMG.

When she mentioned that she didn't think it was ALS I was a llittle untrusting. If I'm twitching in front of her and she says she doesn't see it, is there a difference in what they look for? I still run everyday even though my muscles are more sore than usual. She then told me I was experiencing myclonic jerks at rest and if they didn't bother me, not to worry about it.

Now as I wait to find someone to do the EMG and take my insurance, the twitching mainly occurs when I'm not using the muscles and it get's really bad when laying down to go to sleep.

Should I trust that she "didn't see my twitching"? She's been practicing for over 25 years and told me she can tell if someone has ALS but wait's for results anyways. Again thanks for all of your input. I wish you all well.
 
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Bestfriends14

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Joined
May 7, 2017
Messages
710
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
Twitching is not indicative of ALS, so she would not have been looking for them as a hallmark sign. Your doc would have been looking for clinical weakness, which you don't have. Clinical weakness would be inability to do a heel to toe step, button your shirt, clip your fingernails, or do a calf raise, for example.

With ALS, you certainly wouldn't be running if it was in your leg(s). Neurologists do not take twitching in to account when diagnosing ALS because 70% of people twitch but 70% of the population doesn't have ALS.

You can take ALS from your worries as you've not described anything to do with onset of ALS.

Good luck to you and take good care.
 
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