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SG29

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Dec 26, 2018
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Learn about ALS
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District of Columbia
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Washington
Hello everyone.

First off, I would like to say thank you so much for the continued support you provide to people who are scared about symptoms or newly diagnosed with ALS.

A bit of background information about myself: 27 y/o caucasian female who is in the midst of evaluation by a neurologist. In addition, I did read the BFS page and the sticky notes page. However, I still have some questions in regards to my own symptoms and would appreciate any input :)

About one month ago I noticed twitching in my right thigh. I personally didn't think anything of it until a week later when it continued to persist. I don't quite remember how it progressed but all I remember is that I started to notice the twitch in different areas of my body (lower stomach, butt, lips, eyes, shoulders, back, and chin). This twitching almost felt like little bubbles popping underneath my skin. Additionally, I noticed some myoclonic jerks in my lower extremities and even my hands sometimes. However, as of late, the twitching has again been concentrated to my lower limbs bilaterally with the occasional twitch in my eye, shoulder, or bicep. The twitching also no longer feels like little bubbles or butterflies, and are instead long.. lasting at least 5-10 seconds. For the last 10 days, I am also cramping in both of my calves at rest and when moving.

I have no 'perceived' muscle weakness, just the twitching in my lower limbs and cramping in my calves. I saw a neurologist on the 18th of December and my clinical exam was determined to be normal. All of my labs (including Mg, K+, B12, thyroid, parathyroid, CK, and Ca+) were normal. I have an EMG and NCT schedule on the 16th of January, but I'm a nervous wreck as this seems for far away. My neurologist claims that she is not concerned with ALS at this time secondary to the lack of clinical weakness and thinks that BFS is more probable.

1) Do my symptoms sound like early ALS?

2) By the time of my EMG (1/16/2019), I will have experienced symptoms for about 6 weeks. Is this too early for an accurate EMG reading (presuming it is ALS)?

Thank you for any and all advice you may have. I really appreciate it!

P.S . At first the twitching was very intermittent but daily. Then, it progressed to constant/daily. Now, it is random throughout the day (not as bad as it has been, but worse at night).
 
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No need to fear the EMG. You have twitching but a normal exam by a neurologist, which means no ALS. Hopefully the EMG will reassure you.

Twitching may feel scary, but it’s harmless if unaccompanied by weakness. Healthy people twitch. Twitching is common, nonspecific, and meaningless. It doesn’t matter if it’s body-wide and constant.

The EMG can not be done too early. When the results come back normal, I hope you will accept your good fate.
 
Hi Karen,

I appreciate the prompt reply! Do you think the nightly cramping is suggestive of anything ominous? It's only in my legs so far.
 
Cramping is extremely common and almost always benign. Try stretching your Achilles’ tendons before bedtime (google Achilles’ tendon stretches).

Also increase hydration. Drinking tonic water in the evenings can help, or taking Magnesium Oxide 400 mg at bedtime. Magnesium spray can also be used on the cramps muscles.
 
Thanks Karen!

Magnesium has definitely helped with the cramping! I hate to be incredibly redundant, but do you think that twitching on the face (lips, eyes, cheeks, chin) is discriminatory between BFS or ALS? Sorry, I'm just worried, although I am doing much better in the daytime keeping my mind off of this. Nighttime is when the thoughts start rolling in.
 
do you think that twitching on the face (lips, eyes, cheeks, chin) is discriminatory between BFS or ALS?

I’m going to requote myself: “Twitching may feel scary, but it’s harmless if unaccompanied by weakness. Healthy people twitch. Twitching is common, nonspecific, and meaningless. It doesn’t matter if it’s body-wide and constant.”.
 
Ok thank you!

As you can imagine I am quite nervous. However, I will post again after the EMG is performed.

Thank you for your input!
 
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