I am a mess

Worriedsick1

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Hi,

I would like to thank you in advance for your time and response.

This started in April of this year. I got significant fasics on my left tricep, I brushed it off as post work out muscle fatigue and it went away. Fast forward a a month later I noticed palpable twitching under my right thigh when I was sitting. It would go away when I would stand up. Further, couple of weeks later this twitch moved to the arch of my right foot (carried on for a couple of days). After that I started noticing some stiffness in my right leg and weird sensations in the hip/buttocks area while lying down on my back. Intermittent twitching was still happening in my legs.

I finally went to the Neuro 2 weeks ago, he said he did not notice much in the clinical exam. He also noted that I am anxious, and put me on Zoloft 25 followed by 50 and Etizolam 0.25 mg 2 xper day. He suggested that I come back after 3 weeks for an MRI/EMG/NCV. Since this day I can feel twitches/fasics/ pops all over my body - Feet, back, hips, calves/thighs, arms. I have also started noticing some tremors in my fingers. I feel highly fatigued since the last two months and have discontinued my work outs and walks. I can notice the twitching in my legs after I walk.

I went to the Neuro again and he did an EMG to rule stuff out. During the EMG he said he did not find anything sinister (I will post the final report today).

I am very stressed because of these twitches, and they are constant when I am going to bed or when I wake up. I am starting to feel weaker (perceived weakness) on my right leg, my right knee felt like it was not being able to take my weight yesterday. Can someone please help?! I have no idea what I am going through.
 

lgelb

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The drugs you started can also affect sleep and twitching. So sometimes it can be a chicken vs. egg situation.

I would review your situation with your primary doctor, including discussing a possible sleep study because you are twitching primarily just before and after sleep, but there is no reason at all to think of ALS.

Best,
Laurie
 

affected

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OK, let's take a breath and calm down.
You have been told that there is nothing at all significant going on.
This is like going to a doctor with a headache, being cleared of anything sinister but being sure you must have a brain tumour anyway.
I'm going to say this in all honesty for you - twitching means NOTHING. Truly, not a thing.
Now you are going into a state of real anxiety, and your doctor can help but you need to get back to them really fast and be honest with them (like you have been with us) and then follow their advice and next steps completely.
You can truly be helped, but you will have work at it.

Read this carefully right through, even if you have already.
 

Worriedsick1

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Hi guys, thanks for your response, so the EMG is normal. I have gone through the post you have shared. The doc says that there was no twitching during the test. However, I’m still confused about how I can twitch 30-40 times a day and it doesn’t show up on EMG. Secondly, these Fasics also tend to be more prominent in the claves after some physical exercise or when I’m flexing my arm. Does that mean anything? They are short lived but very unnerving. Can anxiety really cause twitching like this? The meds were supposed to help :( but it seems that they are making things worse.

@affected do you mean get back to the docs so that they can help me with my anxiety issue or to further investigate the cause of twitching?
 

Nikki J

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Benign twitches don’t always show anything on emg. ALS twitches are the distress calls of dying motor neurons. Whether or not the person’s twitches happened at the time of the emg the dying motor neurons would show on emg. Your emg was normal therefore your twitches are not caused by dying motor neurons.

the timing of your twitches is not sinister activity induced benign twitches are quite common.

as Laurie said your meds could exacerbate twitching so that is something to discuss with your doctor. Also if you haven’t had it some blood work to check electrolytes and vitamin levels might be another thing to ask about.

whatever it is your clean exam and emg say no ALS so this isn’t the place for lucky you! You might look into the muscle twitch and bfs groups on reddit. You will find lots of people with similar issues to you
 

affected

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twitching on its own means nothing as the post says.

Yes I mean go back to your doctor and continue to work towards help and a diagnosis. Let your doctor decide what is next. You can get help for anxiety which will amplify any symptoms that are caused by something else. But only a doctor can work through this with you. You don't have a single indication of ALS, so leaving here will do you a mountain of good as you work with your doctor. All the very best.
 

Worriedsick1

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Thank you for your responses. The twitching has taken a toll on the quality of my life, I have slipped into anxiety disorders. I feel weak and fatigued. Stressed out all the time. I definitely can’t lift as much as I used to. So a combination of these things have made me go into a rabbit hole.

My neurologist doesn’t believe that I have fasics at all, because they happen at random I’m not able to show them to him. So I feel lonely and helpless. Im certainly amazed by the strength and courage of members like you, and will contribute to this forum. Take care all.
 

affected

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I'm so sorry you are in such distress.
We truly can't do anything more - asking terminally ill people to hold your hand when you have no symptoms and your doctors are telling you that you don't have a terminal disease is, to be honest, not appropriate.
You need to get help from your primary care doctor and stop posting here. We are sympathetic, but compared to being paralysed, fed by a tube and breathing by a machine, you can understand that we have offered you all we can.
Your doctor however can help you through this. Twitching MEANS NOTHING.
 

Bestfriends14

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I'm going to be a bit blunt here- who cares about twitching?! Seriously, so what? 70% of people twitch. So do 70% of people get ALS? No, you know that they don't.

Neurologists don't diagnose ALS based on twitching. In fact, it's not even in their wheelhouse when they diagnose. You know what is? Clinical exam findings, loss of function, and EMG results, all of which were pristine for you. Give your anxiety meds at least 6 weeks to work. Expecting them to work after only 2 weeks is setting yourself up for disappointment. Anxiety, meds, and lack of sleep, along with a million other things, can cause twitching.

In any case, you no longer need to seek reassurance from individuals living with a terminal illness or their very tired caregivers; that is what counsellors are for. Please take a step back and look at your situation objectively and consider how blessed you are to have your health. Be grateful, won't you?

Best of luck to you. I sincerely hope you find peace. Take good care
 

Worriedsick1

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I’m sorry, I’ll try and find help in the right place. Wish you all the very best.
 
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