I am beyond terrified. I think it’s real this time.

[Ren-in-Black]

I don’t think there will be a next big issue because this will be the one that kills me off.
I was researching to try and make myself feel better. Believe what everyone was saying, but instead it’s just made me believe people even less. Now I’m even more convinced this is the end.

This is a pretty long thread already so I hope no one minds me interjecting, but I am so grateful to have found this forum. My details are different but the story is the same as so many others: sudden, unexplained localized twitch, Dr. Google, concerned primary care doc, cleared by neurologist, huge feeling of relief, twitching doesn't go away, doubts creep in, questions and what if's, nagged by stories of "exceptions to the rule" on the internet, etc., etc., etc.

And like niknakx, was at one point sure that this was it, trying to learn to accept death and figure out how to tell my family. Such a dark time.

I got out of that pit as the time went on and with more reassurance from my neuro, who needless to say is a pretty smart dude.

Still react to twitches with anxiety though. Fears that somehow it was ALS making itself known that it was coming, then somehow evading the neuro's examination, and waiting in the dark to strike when I believe I'm safe. It is not an easy way to live.

Again, grateful to find others going through and those who have gotten to the other side.

[niknakx]

Did your twitch only twitch when you were using or flexing the muscle? Mine is in my foot and whenever I even slightly activate the muscle to flex my ropes upwards it begins twitching like crazy and will not stop until I relax the muscle. I keep waking up in the mornings thinking this will might be the day I can no long lift my toes up.

[Ren-in-Black]

No I noticed it when I simply had my arm on my chair's armrest at work. Sometimes flexing stopped it, sometimes it didn't. Every once in a while it seemed like it would twitch right after I flexed. It was inconsistent which didn't help my anxiety.

This may have been mentioned already, but is it possible you've developed "exercise intolerance" in the foot?

[Ren-in-Black]

Sorry niknakx, never mind my question on exercise intolerance. I forgot that you had surgery on it and that's why it's sunken and twitching now. I am sorry you are feeling this way. I used to be like this off and on but never thought I might be dying until I asked Dr. Google.

[niknakx]

I am going to hopefully see a neurologist today. I can’t wait any longer to get a professional opinion. I had a complete breakdown in the middle of the night and couldn’t stop crying. So my boyfriend is taking the day off work to take me to the hospital. I am so scared guys.

[Fishmanpa]

But this isn’t a case where I am imagining it. My boyfriend and my friend have told me they can also see the sinking skin and they can physically see and feel the muscle fasciculations under the skin. I would love to say to myself that it is all in my head, but in this case, it’s not. It’s really there. I can see it and feel it. I have atrophy and fasciculations and I am so scared.
My doctors back in the UK said it is all caused by my foot surgery two years ago, but why would the muscles still be twitching after 2 years? Surely they would have stopped by now. I never even noticed it until I was staring at my foot, so I don’t even have a clue how long it’s been doing that. I feel so lost and scared. I want to get out of the rabbit hole, but I can’t shake the feeling about this. I want to get better, but I just keep thinking it’s going to get worse. I see a neurologist on Monday. I’m scared they are going to say something bad, and not be able to tell me everything is okay.

I've had two heart attacks, triple bypass, stents and Stage IVa H&N cancer between 2007 and 2013. The side effects from all of that are real just as the side effects from your foot surgery are real. It doesn't mean you or I have some deadly life threatening illness but those side effects are a permanent reminder of what you and I went through. It just means we have side effects and sometimes we have to live with them as unpleasant as they can be.

Anyway... Let us know what the doctor says. 'Told Ya So Gang' on standby When you get the all clear, perhaps it would be time to treat the real issue.

FMP

[niknakx]

I just saw a neurologist. She did some basic strength tests on me, did my reflexes and examined my foot. She couldn’t find anything wrong at all. I got her to feel my fasciculations and she said it was my pulse, which it isn’t. I’m anxious but I’m not stupid.
She then told me a bunch of stuff about how the disease starts at the top of the legs or arms, which I know isn’t true. So as soon as she said that I started doubting things she was saying. She said if it was the disease I would have a foot drop which isn’t necessarily true.

[Ren-in-Black]

I am brand-spanking new here so I can't really comment on what the doctor said but I am sorry that you felt you couldn't trust her judgment. It is so hard when our brains want definitive answers. But even after I got the OK from a neuromuscular MD that I trusted, I still get doubts now and then. I feel for what you are going through.

[niknakx]

I just want the fasciculations on my foot to stop. They are scaring me. One localised point and only freaks out when I activate the muscle even a little bit. I mean I can’t think of anything else that would cause that at all. I was feeling better for a few hours, but my mood is back to zero again and I am scared. I just feel like I’m waiting for my foot to drop or not be able to lift my toes.

[BlueIris]

It's a twitch, that's all. You've had two separate medical practitioners tell you there's nothing physically wrong with you.

You need to get the anxiety under control, that's the key to getting shot of those awful feelings. I know I sound harsh but I really do hope you can move past this.