Confirmed tongue fasciculations, body wide twitching, mildly bilateral brisk reflexes and positive Hoffmans sign

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Clarification

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Good afternoon everyone and thank you so much to anyone who reads and offers insights to my questions. I appreciate all response :) I have been a lurker to these forums and BFS forums since I started twitching but waited until I saw a neurologist to post. 11 months ago, I started experiencing localized twitching in my left bicep, and just days after, started experiencing body wide twitching, including my tongue. 5 months into the twitching, I got an EMG that picked up rare fasciculation in my left calf (which has been persistently twitching nonstop for 2 months) and the findings stated there were no signs of anything ominous and that my fasciculation's were most likely consistent with Benign Fasciculation Syndrome. I finally was able to see a neurologist this week (11 months into twitching) and she confirmed I had some tongue fascinations while my tongue was at rest (that I can not feel), mildly bilateral brisk reflexes and a positive Hoffmans sign--otherwise everything else was normal. She diagnosed me with "fascinations" and said she would see me for a follow up in August (6 months from now which would be 17 months into twitching) where she will do a clinical and EMG. I would like to add that I have two types of twitching on my tongue--tongue twitching I can feel that feels like all the other twitching I experience on my body; and tongue twitching I can not feel when my tongue is at rest. I am hoping to clear up three misconceptions that I think I have.

The first understanding I have is true tongue fasciculation's while the tongue is at rest=ALS. Is this true?
The second understanding I have is a clean EMG (other than one that picks up fasciculation's)=no ALS. My was done 5 months after the twitching started.
The third understanding I have is that an EMG can not be done too early and if twitching was caused my MND or ALS it would be picked up.

If this is true and the only abnormality on my EMG was rare fasciculation's of the left calf, why would my neurologist suggest another EMG 6 months from now? Is it true that my first EMG could have been done too early and there may be changes on my next EMG? Is having resting tongue fasciculation's, mildly brisk reflexes, a positive Hoffmans sign and body wide twitching mean a possibility that I have ALS? Is it possible to have 11 months of twitching and not have any atrophy or weakness? Has anyone ever experienced a lengthy period of time of twitching before showing clinical weakness, atrophy or EMG findings?

I am a 33 year old female with three baby angels, and I truly appreciate your time reading this and your time for responses :)
 

lgelb

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She may want to reassure you (patients often feel better with a plan than when they are dismissed) or consider the followup best practice under the circumstances, without having any thought as to ALS, which I don't, either, from what you've said. Feel free to post the de-identified EMG tables/report.

I have never heard of a "too early, ALS found later" EMG with your history.

It is totally possible to twitch benignly for years with no weakness. The BFS diagnosis sounds in line with your history as well.

Best,
Laurie
 

affected

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I'm a little confused I'm sorry.
You have been 'lurking' here for months, and waited until you had seen a neurologist.
You then had a full clinical exam and EMG and were told nothing was wrong.
Now you ask us questions that you should have cleared up at that appointment?

Answers:
1. no
2. yes
3. yes
4. the neurologist is being thorough

You did read the sticky I would imagine if you have been here for months? It truly answers all this.

Please start living with your babies.
 

Clarification

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Laurie, thank you so much for your kind and quick reply! I was wondering if you could clarify "It is totally possible to twitch benignly for years with no weakness." Did you mean it is possible to twitch benignly for years with no weakness to later be diagnosed with ALS or it is possible to twitch benignly for years with no weakness because it is Benign fasciculation syndrome. Thank you so much for your response and insights again! :)
 

lgelb

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The latter. What you are hearing here is that there is no reason to worry about ALS. That's great news to run with, so, as Tillie says, enjoy your family and don't look back.
 
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