Hoping this may help others

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AtSea

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Hello to anyone reading this. Something is calling me to post here to share my story with the hope it can help someone who’s waiting for results. I do have a question for those knowledgeable with how to read an EMG at the end.

The hopefully short story...the day after Thanksgiving I woke up with an eye twitch. Didn’t think a thing about it. A week later, my forearms seemed a little weird feeling, then started twitching, then what seemed like no time at all, my whole body was twitching. Everything: shoulders, arms, legs, scalp, ear, lips, throat, areas I don’t want to talk about on here. I also couldn’t get rid (and still haven’t) of a lump feeling in my throat with some other uncomfortable feelings with it.

I googled. And I instantly went into a panic. I didn’t know about this forum, or any other BFS forum for a few weeks as I’m terrible with the internet and was living in a panic state. My Dr sent for a Strep test which came back positive so I was hoping that would take care of it. Took two rounds of antibiotics and test come back negative but feeling was still there. That further drove me into a panic.

They scheduled me for a Neuro appointment and I went ASAP. She was confident in her assessment and said sometimes she has people that just twitch all of a sudden. That was hard for me to take in at the time and after a week she called and asked if an EMG would help. By this time I found this website and was looking at a ton of posts as a guest. That didn’t help a ton, but the “read before posting” sure did! I took the soonest EMG I could get. I still was not relaxed, but also slowly starting to put things into perspective because of that “read before” post.

The Neuro had me see her a second time a couple days before the EMG and did another physical check. This was 4 weeks after the first meeting. It wasn’t as drawn out as the first one but it was enough for her. I conducted the EMG test (didn’t expect the uncomfortable feeling when it came to the lower back!) and had to wait a day for the results. Dr called late on a Tuesday to say everything came back as expected and suggested a way forward.

All that to say, please, please, if you are in a similar position with similar onset of symptoms and are waiting for testing and answers, take everything in that “read before” post to heart. Find a Dr you trust and actually trust them. I believe one of the posters name I was drawn to was “affected” because she was caring but also stern, at least how I read it. Thank you because you helped me when I was very far down in spirit.

To everyone on here who is affected, I am astonished by your willingness to share stories, connect, and your effort to help others. Thank you for everything you have done on this site, and God bless.

Currently, I’m still twitching and have aches and pains, weird pains. I saw an ENT who said he suspects LPN for my throat issue. We will see how that turns out. But that isn’t for this site or anyone else except for the doctors I’m entrusted with. I’ve learned a couple things: I’m not as close to God as I thought I was and I can’t do and/or think about work almost all the time. The joy of life is with family and friends. I’m on a mission to change these in my life.

Finally, my question about my EMG is what are these numbers saying? I’m confident in my Neuro’s assessment of the results and am not posting asking for anyone’s interpretation, but my nature is to know the what behind the why. I looked at a couple of websites but it seemed a little over my head. Hoping someone is willing to point me in a simple direction if there’s another post about it or a short reply to this. I see the millisecond next to a lot of the categories...is that saying the stimulation took however long to go up my limb to the brain and back down to react? I wasn’t able to ask my Dr this because it was late and she had to move on to people who needed her.

Thank you again for the help y’all may not have known you were giving to me, and how any future responses to help me understand. God bless you all.
 

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Nikki J

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What you are looking at with the numbers are the nerve conduction studies. The bottom chart on the last page is the emg which is what matters with ALS but your doctor said everything was fine anyway. Yes the numbers tell how well your nerves conduct impulses. ALS is a motor neuron disease not a nerve disease which is why the emg is the ALS test and the ncs looks at nerve issues

congratulations on a normal exam and test
 

lgelb

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I have attached an NCS summary (the slides near the end may help you the most) as regards things like "are absent F waves troubling" and what the numbers mean.

As Nikki says, you are good to go. Thank you for stopping back with your story. I am sure it will help others.

Best,
Laurie
 

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AtSea

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Laurie,

Thank you for this file. It’s simple enough to read and understand!
 
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