Does this sound like ALS? I’m so scared.

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Girlmama

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Hi everyone, thank you so much for taking the time that you do not have to take to read this for me.

I’m a 29 y/o female. I have had muscle twitches since thanksgiving, 2021. They started in my eye only for about 3 weeks then went everywhere in my body, only at rest.

I went to the neurologist & my MRI was clean aside from an arachnoid cyst, incidental finding, & found out today that I do have brisk reflexes. I have no clinical weakness. My EMG is scheduled for this upcoming Monday.

Does this sound like the beginnings of ALS? I’m terrified. I’ve read the sticky every day for months for comfort but wanted to ask those with experience.

Thank you again!
 

lgelb

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No, it does not. I would expect a reassuring EMG as regards ALS. Meanwhile, as you will have read, focusing on sleep, stress, hydration, nutrition, and exercise can be helpful.

Best,
Laurie
 

Girlmama

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Thank you! I was hoping you’d be the one to reply- which may seem strange seeing as we don’t know each other but you’re very factual and to the point and I appreciate that!

One thing I did forget to add is that for the past year, when I raise both of my arms up to do anything (for example, hanging laundry up in the closet, etc) the muscles in my neck and on tops of my shoulders will burn kind of like they feel when you’re in the middle of a workout. My thighs also do the same when I’m going up stairs etc- is that also not concerning? That is the last of my relevant info/symptoms (if you would even consider that a symptom)

I made the miserable mistake of googling causes of twitching when it was still just my eye back in December and of course the first things that pop up were all terrifying things and since then, I’ve developed a presumed anxiety that I’ve never had before in my life over all of this. After that google search, the next day, the body wide twitches started. And two weeks later, my eye twitch was totally gone and only comes back now when my contacts are dry. I’m assuming all is anxiety related and am hoping to be reassured after Monday but was just wanting the opinion of those that know the awful disease, inside and out.
 

lgelb

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A year of effort-related aching isn't ALS, but could be anything from deconditioning during the pandemic to a lingering virus to fibromyalgia. I would make sure that an internist has ordered recent labs for you.
 

Girlmama

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I wanted to come back and update the thread as it may help anyone else feeling like I did. I had my EMG & NCS today (attached) and was told all was normal and I have benign fasciculation syndrome.

Those that understand reading EMGS, I may be looking way too deep into this but obviously my als fears are gone now because I trust my doctors but when he walked in to do the EMG after the NCS, he looked at my hands and asked if I had any weakness anywhere- to which I responded no. But to those that can understand what these numbers mean, do my hands look good? Lol
 

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Nikki J

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The numbers are part of the nerve conduction study which have nothing to do with ALS. Your emg is perfectly normal as you were told. I think your ncs is as well but1 your doctor would have told if not and 2 you should have a summary page as well as charts.

congratulations on your normal emg and diagnosis of bfs. Please don’t fall into the rabbit hole of what ifs. Go and enjoy a wonderful long healthy life
 

Girlmama

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Thank you! There was no summary page but I do have a follow up appt on 2/14 so I intend on asking questions then. I just wanted to make sure there wasn’t anything weird in the NCS numbers that I should ask about (outside of als fears because I do trust my doctor). Thanks again for getting back to me!!
 

Girlmama

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Hi again!

I wanted to update others that come to this forum seeking answers for twitching because they consulted dr google and were misguided here.

After my clean EMG & NCS, I am diagnosed with BFS. I had my final neurologist appt yesterday to discuss it. To save some of the sweet admins time here, I wanted to relay something along that came from my neuro yesterday, “you are 5 months into fasciculations. Your EMG was done 4 months into them. Fasciculations do NOT come before weakness unless ALS. Fascics happen well into the disease and a clean EMG in the presence of ongoing twitches is 100% accurate in taking MND off the table- no matter how it would present.” So to reiterate (which you’ll see in the Read Before Posting) twitching alone is NOT ALS! Don’t be like me and waste the PALS time posting here! Go to AboutBfs and use their search bar and read all of their info. Don’t get sucked into a health anxiety ridden rabbit hole. You have your life, you are BLESSED!

Listen to your neurologist and don’t second guess them. They have YEARS of practice, you have google.

Praying so hard for all of you that are here and actually diagnosed. I have high hopes of a cure. My God is a big God and he is with you! He’s the only way I got out of the dark headspace I was in.

Thank you all!

Fasciculations do NOT come before weakness IN als*
 
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ShiftKicker

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Thank you so much for returning to let the folks here know the outcome of your appointment. It really does help people who come here searching for answers to see wonderful posts like yours.

All the best-
 

KevinM

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Very happy for your diagnosis, though many ALS specialists don’t share the opinion that weakness always precedes fasciculations in ALS. That doesn’t apply in your case, but you will find that this statement isn’t universally accepted.

Again, very happy to hear that you have been cleared of possible MND.
 

lgelb

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For the benefit of future readers:

In medicine, there are few "always," but the clinical weakness (inability to perform movements that you could easily before) being a first sign of trouble in ALS is a pretty reliable order of things. There is no great disagreement as regards that statement.

That is why most PALS here didn't come through the "Could It Be" path, because when you can't do things, really can't do them, both you and others notice.

Best,
Laurie
 

Girlmama

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Unfortunately, it’s me again! I just had a quick question… My foot has been feeling like it’s going to cramp but never fully cramps whenever I flex my big toe and it’s been consistent for two days without stopping… Would my EMG from The end of April show anything sinister considering that foot in particular was checked? Or could some thing new have came about in the past month that would not have shown up? I ask because I was twitching in that foot at the time so I haven’t been stressed whatsoever up until the weird cramp feeling started yesterday. So just wanted to double check with those who know EMGs better than I do before I message my neurologist. Thank you so much for your time!

*end of March
 

wishmobbing

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Relax, ALS is about failing not feeling. If you feel like it's going to cramp but you can still so everything that doesn't mean anything.
Let me just quote you, because you were right then:
Don’t get sucked into a health anxiety ridden rabbit hole.
 
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