Twitching for about 5 months

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Corey S

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Hello Everyone,

First off I just want to say that it is great to have these forums for those going through this horrible disease.

So first, I will admit that I do have health anxiety. I am on here to ask some questions on my symptoms. From all the research that I have done on ALS, I have seen way too many contradictory articles about the disease. For example, most people will say that muscle weakness always starts before twitching, some will say that twitching can come first. Which is it? Most articles say that twitching always starts in one place, but I read one today that again contradicts that. I just need clarity on what I should be looking for.

Here is what is going on (and I know that it is not much). I have had muscle twitching pretty much all over my body, mainly my calves and arms for about 5 months. I have no other symptoms. In fact when I first noticed the twitching in my left arm, it was worse when I first noticed it 5 months then it is right now. I know that ALS cannot be diagnosed on twitching alone, but my fear always comes down to, when is it going to worse? I wake up everyday checking my muscles to make sure that they are not getting weak. Every time I see my muscles twitching I go into a panic attack. At this point I really do not want to go get an EMG done as it would heighten my anxiety.

Please, any insights that any of you have on twitching, it would be much appreciated. Thank you all in advance!
 

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I have moved your post to the appropriate subforum. Please make sure to read the below link

Twitching is comprehensively addressed here: Read Before Posting

We always recommend you visit with a doctor first for health concerns. If you are not doing so out of fear, I can tell you that searching online and engaging on forums for people with terminal diseases is not the way to allay fears either- it'll only increase them. Go see your doctor so they can examine you and provide you immediate feedback based on their clinical observations.
 

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As well as reading the post Shiftkicker has given you I have some insight - twitching means nothing. Please work with a doctor and have whatever tests they want to run, you don't even talk about having been to a doctor. You are not qualified to research and even begin to diagnose yourself truly. All the very best.
 

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What should you be looking for? Nothing. See a doctor if you are worried (which you obviously are), but widespread twitching with no other issues means nothing as regards any neuromuscular disease, nor is it a sign of future weakness.

I would be looking at diet, hydration, stress, exercise/stretching, and sleep.

Best,
Laurie
 

Corey S

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Thank you all for your replies. I am sure that answering questions like mine can get frustesting, so I truly appreciate it.

Between your posts and that link that Shiftkicker sent, it definitely helped to ease the anxiety. The post was very clear and to the point which I appreciate since most other articles that you find are not.

I didn't even state all details either, and what the article said really helped. I am 33 (as of tomorrow), and my fasciculations are so minor and they go away as fast as they come, and mostly only happen when it sitting or laying down. The article helps when it states the percentages (although that is for under 30).

The hard part is that my brain always tells me "well I could be the 1 in 1 million"
 

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Well when your brain tells you that, go see a doctor. I do wish you the best.
 

Corey S

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Thank you all again for your help. I just want to be clear, I should only worry about ALS if I have the twitching along with muscle weakness, is that correct? For example, I woke up this morning with pretty intense twitching only in my right thigh. It lasted about a hour or 2 and has since subsided. Still no weakness present.

I assume that is still nothing to worry about? I do plan on calling my doctor about this to just get it checked out with them too, however I like to have your opinions as well.

Thank you all for your support!
 

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To be clear, you should only worry about ALS if you have an actual failure diagnosed your doctor (not by you) that causes them to send you to a neuromuscular specialist.
You have nothing to worry about concerning ALS, not a single thing. We can't say it more clearly.
 

Corey S

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Ok thank you, this has really been helping me. So I really appreciate your support.

The one thing that I do not understand, is the muscle weakness. Is it like one day your muscles feel great, then the next you wake up with foot drop or not be able to move my arms/legs? Or is it more gradual than that?

Any more insight into this would be great to know.

Thank you!
 

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Hi Corey- I think your questions have been answered here for now. If you have any further questions, please speak with your doctors. If you feel the urge to keep asking questions about ALS despite not showing signs of it, make sure to read the Read Before Posting for your answers. That spares the folk here having to answer the same questions over and over.
 

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It is a common question, that's for sure. And the answer is...ALS is a disease of lost function. You do not "feel weak." You just can't do something that you used to do without thinking.

Here are some of the first things my husband was not able to do:

Get out of a bathtub
Turn off a light switch
Lift a loaf of bread onto the checkout counter
Put on a sweater

These things came in close enough succession that there was no question of whether there was something wrong or not. In your case, there's no need to test yourself or worry about the future. ALS does not begin as you have described.

I am closing this thread. Please do not start another unless a neurologist states that there is a concern for neuromuscular disease. But please do seek more/better help for your health anxiety, lest it take over your life.
 

Corey S

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Hello Everyone,

As a fellow person with pretty intense health anxiety, I want to share some insights that I am hoping will help all that read this thread.

First, please listen to what the kind and caring people say to you on this forum. Yes they are not doctors, but they unfortunately know a lot about ALS from personal experience in some way.

I have had health anxiety around ALS on and off, ranging from mild to severe for the past year plus. Mainly the symptom that caused/causes this anxiety is the muscle twitches. As anyone on this forum would say, muscles twitches alone mean nothing. Trust me, it took me a long time to believe this, but it is true and I will explain why.

I always had a hard time believing that anxiety can cause a slew of physical symptoms. It wasn't until maybe a few days ago that it hit me and now I 100% believe it. After working with a therapist on my health anxiety, after talking to people that I care about, after talking to the folks on this forum, my anxiety has decreased about 90%. Since then, my twitching, even though I still feel it on occasion here and there, is also 90% gone. I have also started taking Vitamin B12 and Magnesium daily over the past week, and have also seen a great deal of twitching relief since starting that too.

Long story short, please do not let your symptoms and health anxiety run your life. I have done it for far too long, I have lost many moments with my daughter and family due to my anxiety.

Lastly, I want to thank the folks on this forum. Thank you for your kindness to all of us with health anxiety (despite how frustrating it may be). I truly wish you all the best.
 
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