3 EMG, but still not reassured

[Byron84]

Hi there,
after months of waiting and reading the forum (I've read the sticky at least 20 times), I’ve made the decision to tell you my story and ask for your opinion. First of all sorry for my english.

I’m a 38 years old male from Hungary. Before the christmas of 2022 my upper left eyelid started to twitch, and a few weeks later my right lower eyelid did the same. I did not think it’s a big problem, but have started to google the reason of twitching. Probably this was the main problem, but in January I had fasciculations everywhere in my body. Sometime here, sometimes there, but almost always. Both of my calves twitch 24/7. My neurologist told me at the end of January this is not a big issue, my neurological exam was good, but for reassurance he told me to make an appointment for an EMG.

I had my first EMG in my right m.tibialis anterior and l.dorsalis interosseus but it was completely clean. The doctor told me, he is working with ALS patients for more than 40 years and I definitely don’t have ALS. Unfortunately I couldn’t accept the results, because I was twitching all the time - without any other symptomps - so I made an appointment with the most respected EMG specialist in Hungary. She is a neurophysiologist for more than 30 years.

I had an completely clean NCV and EMG with her. She has checked my right n.medianus and right n.peroneus, but doesn’t even find a fasciculation. She told me there is no way I have ALS after twitching for 2 months and without any other symptoms.

I had a follow up appointment with the first doctor in the middle of April, and because I still had the twitches I did not cancel it and visited the doctor.

He asked me where I have the fasciculations. 90% percent of them are in my calves, so he checked both of my calves and my right biceps too. The results were completely clean after 4 months of constant twitching.

It’s been a month now since my 3rd EMG and I am still twiching all day, every day. I don’t understand why I have this and have a constant fear of ALS, probably I am a bit anxious now. I’ve read a lot about it and have found some stories about long-long twitching before any other symptoms. Is it true that the EMG exam only show ALS if you already have some muscle wasting? Is it possible to have fasciculations in my calves, thighs, abdomen, back, arms, neck, face for almost 5 months without developing any other symptoms?

Some documents say bodywide twiching like this is never related with ALS, some of them say the whole opposite, such as BFS mostly happens in the same muscles. My calves twitch all day every day, and I have random twichtes all around the body. Sometimes it is only a twitch, sometimes it lasts for 10-20 seconds before it goes away.

Could you please somehow reassure me?
My biggest fear that these fasciculations are maybe only early signs...
Thank you,
B.

 

[lgelb]

Byron, you've answered all your own questions. You have serious health anxiety and should see a counselor to help reassure yourself and address issues that may underlie the anxiety (and probably some of the twitching). We can't do it from here.

But to answer your questions:
Is it true that the EMG exam only show ALS if you already have some muscle wasting? No.

Is it possible to have fasciculations in my calves, thighs, abdomen, back, arms, neck, face for almost 5 months without developing any other symptoms? Possible but unlikely, and not applicable to you with 3 clean EMGs.

Some documents say bodywide twitching like this is never related with ALS, some of them say the whole opposite, such as BFS mostly happens in the same muscles. ALS presents with more than twitching, so the premise of your question is moot. But body-wide twitching is even less concerning.

There are many reasons for twitching, as you can find from searching here and your own common sense. These include stress, lack of sleep, dehydration, a less-than-nutritious diet (eat more colorful, less processed foods), lack of exercise, and electrolyte imbalances.

Get some help. Don't waste your life on Google and sites like ours. I cannot think of any PALS ever who ended up diagnosed with ALS after 3 clean EMGs and several months of bodywide twitching.

Best,
Laurie

 

[Byron84]

Thank you very much Laurie, I try my best.

 

[Byron84]

I have one more quick question about EMG. If the twitches are related to ALS but no other symptoms have developed yet, surely the EMG would show something wrong, since the twitches are already present? Is this 100 percent sure?

I've found this and this is why I am still concerned:
Fasciculation and cramps without weakness or muscle atrophy are recognized as a benign syndrome. The authors report a patient with cramp and fasciculation, which persisted for 1 year without abnormal motor unit morphology on EMG before progressive weakness, muscle atrophy, and EMG abnormalities developed. This observation raises the possibility that lower motor neuron hyperexcitability may precede motor neuron death in motor neuron disease.

 

[Nikki J]

A 19 year old case study? One person 2 decades ago? Stop searching you are feeding your anxiety. No one can know about this person maybe they happened to have benign fasciculations and then got ALS. we obviously can’t reassure you. We are not here to argue

 

[Byron84]

I am so sorry, I don't want to argue, I'm just having anxiety after 5 months of twitching.
I really appreciate all your replies and the helpful attitude you show to the forum members.
All of you are probably used to peoples anxiety by now, and I am just asking you about this, because you are facing these questions every day, and probably you are already experts of this topic. So one last question and I try not to bother you again. According to todays technology the EMG would show ALS and problems, if the twitches are related to ALS but no other symptoms have developed yet?

 

[Tomswife]

Gee whiz. Why are you asking this forum over and over? Go to a neurologist and ask them. Sit in front of the physician and get your questions answered, in person.

 

[ShiftKicker]

Hi Byron-

It is time to return to your doctors. We can not be used in place of actual medical attention. You are asking questions that are getting increasingly specific, not because you have any real risk of ALS but because you are anxious. You do not appear to trust your doctors or the multiple EMGs you've already had, and this forum will likely also not provide the kind of reassurance you seek, no matter how many different questions you ask.

We are not set up to support those with health anxiety here- this forum is for those who have been directly affected by a diagnosis of ALS/MND. I will be closing this thread. Please do not open another. If you have not sought care for your overwhelming anxiety, please do so, as it is clearly causing you some distress.

Take care