7 months later...still twitching

[FreakOutQueen]

Hi all, I have been mostly able to calm my fears about my awful twitching, but today it has gotten the best of me. What started 7 months ago in my eyelid moved to all over my body and now for the past 4-5 months has settled mainly in the arches of my feet and occasionally all over/random. I’m so sick of my feet twitching and I just want it to stop. I went to a Neurologist who said unless I have weakness or muscle atrophy she won’t do an EMG but I feel like the twitching should have subsided by now as I am on medication and in therapy. Why isn’t it stopping???? Why has it settled in my feet????? Ughhhhh!!!!!!!

[JamesG_UK]

Hey, sorry to hear you're going through this. I'm also suffering from twitching, which has gone on for a couple of months now, and mine too is now mostly in my feet, but also my calf muscles (it used to be all over). The anxiety that the twitching originally caused has subsided, but the twitching certainly hasn't. I'm wondering if the medication itself it at least making the twitching worse - it can be a side effect apparently. Also, even though you think that the therapy and the medication should be helping, the twitching is still causing you some degree of anxiety or concern, and maybe this is what's behind it?? I'm wondering if we have to truly let go of all focus on twitching before it calms down. Anyway, just thought I'd respond to let you know that you're not alone!

[FreakOutQueen]

Thank you so much for replying! I also wonder if it is a side effect of medication or possibly my thyroid. I’m really sorry you are going through this as well. It is by far the worst/ scariest symptom I’ve experienced. I hope it goes away for you soon. Best wishes!!!

[jaynehal]

I have had twitching for a good few months now, they are all over get a lot in my neck, it's really hard to try and forget them isn't it bes quee when they come we spend hours wondering why x

[Josh1234]

21 months. It's benign fasciculation syndrome. It's probably not going away, tbh.

[FreakOutQueen]

Josh - is this just something we have to live with now? I️ don’t Notice it going about my day, but if I️ stop and look at my feet they will be twitching away. I️ hate it!

[nivekc251]

It sucks I've been twitching for 22 months now. My calves twitch constantly had a clean EMG multiple clinical exams I'm healthy af lol. I just twitch, I have a hot spot on my hand between my pointer and middle 2nd dorsal interrossei. Stay busy don't stop and expect twitches. Keep going about your day and try not to think about it. Kinda like blinking or the fact that your eyes are constantly trying to not see your nose :doh:

[Becazican]

get a new neurologist, you may have a nerve entrapped or idiopathic neuropathy

[Josh1234]

No reason for a new neurologist. No weakness, no EMG

[melfish]

No reason for a new neurologist. No weakness, no EMG

^^ If neuros in this country would stop handing out EMGs like candy, perhaps people would move on from this crippling anxiety sooner. It just perpetuates the reassurance/what if cycle. Unfortunately, CYA medicine and a user-pays, for-profit system works against this.

I've read several ALS specialists say they will not offer an EMG unless they have clinical cause to. And that cause does not extend to twitching in the absence of weakness.

---------- Post added at 10:45 ---------- Previous post was at 10:43 ----------

And I include myself in this. In the back of my mind, a little voice tells me I need an EMG to be "safe" because I see so many other people going for one (needlessly)

[FreakOutQueen]

I just went for my yearly physical and she examined my twitching and did a strength test. She told me I do not need an EMG and need to get the ALS fears out of my mind because I do not have it. She is a new doctor and I really really like her. She wants to see me back again to closely follow my anxiety, but other than that she says I am super healthy. She did do some lab work to check my thyroid, inflammation and metabolic levels. I get the results tomorrow.