Did not want to join this club. And YES, I've read all the stickies!

[kyllikki]

Welcome to my first post (beside my intro.) I have nearly posted many times but found that just the act of writing let me put my CBT skills to use and dig myself out of my hole.

Not this time.

You can all see by which sub-forum I'm in what's got me going: ALS.

I've got the twitches (alllll over, but mostly in lower legs - exactly where people get them from BFS and stress and all that), I've got subjective weakness (not clinical, I don't think -- note, I also sat on my butt for ALL of lockdown, like, 14 full months), and I've got a bunch of other stuff that doesn't line up with ALS (tingling, blurry vision, double vision at the extremes of my visual field, trembling hands). I'm over 30 but under 40. Female. Can you hear me acknowledging this is probably not THAT? And yet. And yet...

This is the utter worst HA ever. SIGH.

...

While I'm here, we're sure absolutely none of us ever went on to get ALS, yes? Not that the plural of "anecdote" is "data," but still...

Sending best wishes to everyone else going through this. What a lousy club.

[jojo2316]

Hi Kylikki
Well. Welcome to the lousy club. I hope escape the quagmire soon. I’ve PM’d you

[kyllikki]

Want to update everyone: Twitching getting a bit better! Tends to come in clusters, now, with longer periods of nice calm quiet muscles, or be totally random and diffuse.
It probably helps that I have been firmly told by a medical professional that they don't think I have .... that. And that it is definitely not a brain tumor, either.
So what does that leave? Horrific posture, lack of sleep, and S T R E S S.

I think for HA sufferers, the hardest thing to accept is that your HA really CAN be the thing that is making you miserable, from top to bottom, front to back, start to finish.

Anyway, as I type this, I'm ready to move on. Please hope you don't see me back here any time soon! Sending best wishes and best of luck to everyone.

[jojo2316]

So so glad you are feeling better. And. Thank you so much for updating on here - if helps people searching threads so much xxx

[kyllikki]

Well. I made a terrible error last night and googled BFS and ended up on the ALS forums kinda by accident and of course the FIRST post I see is from someone who claims they presented as twitching first, weakness later (though his story made me think he wasn't a 100% reliable narrator, God rest his soul.) Then saw the "clean EMG" posts and realized I forgot to ask if mine were clean or not. Cue massive HA spiral. Ended up sobbing.

My twitching really does seem to be a tiny bit better, though. Only a tiny bit, but I'm clinging to any perceived improvement with both hands. Speaking of both hands, I also tried out a piece of playground equipment I passed today (I promise no children were waiting in queue for it) and succeeded in going hand-grip to hand-grip over 6 full bars from that thingee that looks like a ladder mounted parallel to the ground, that you're meant to hang off of. It was a run of 8 total. I think I could have done it but I didn't want to pull something. My right hand did feel worse than my left as I was doing it, but I felt a little better that I could! I also walked a mile and felt somewhat better by the time I hit the end. Tired! But better.

Anyway, my next little re-assurance project is, as a community service, tallying up us worriers. So far I've gotten through 4 pages of the 13 total here -- and found 44 distinct, credible individuals who worried about ALS/MND between 2009 and 2018. My thought was that I would look for people who have passed at least the two year mark of a) posting on this forum, about b) something other than ALS/MND symptoms.

So far:

14/44 "lost to follow up" / not enough posts
12/44 "probably not" / right at 2 year past symptoms threshold
18/44 "definitely nots" - still alive and still have HA, I guess!

This does make me feel a bit better. I'll keep tallying as a community service!

[kyllikki]

Hello hello, I've got through 27 more users who reported twitching (some posting in this sub, some on a BFS thread elsewhere.) Here are the REASSURING totals! I did discount some single posters / people who stuck around here for less than a year, and also a few folks who really didn't seem like trustworthy narrators. Here are the totals:

6/27 "lost to follow up" / not enough posts
4/27 "probably not" / right at 2 year past symptoms threshold
17/27 "definitely not" - still alive and still have HA!

I'm starting to think there's a great statistical study here for someone if they're interested. I'm doing this manually but could easily be automated. Would be fascinating to see if health anxiety really does latch on to certain diseases, and/or interesting to see just how common twitching really is, either in anxiety folks or even in "normal" folks, or both.

I will say, we are a twitchy bunch of people, it seems....

[jojo2316]

Hello hello, I've got through 27 more users who reported twitching (some posting in this sub, some on a BFS thread elsewhere.) Here are the REASSURING totals! I did discount some single posters / people who stuck around here for less than a year, and also a few folks who really didn't seem like trustworthy narrators. Here are the totals:

6/27 "lost to follow up" / not enough posts
4/27 "probably not" / right at 2 year past symptoms threshold
17/27 "definitely not" - still alive and still have HA!

I'm starting to think there's a great statistical study here for someone if they're interested. I'm doing this manually but could easily be automated. Would be fascinating to see if health anxiety really does latch on to certain diseases, and/or interesting to see just how common twitching really is, either in anxiety folks or even in "normal" folks, or both.

I will say, we are a twitchy bunch of people, it seems....

This is exactly the post I needed to read just now!

[kyllikki]

Today's stats (for which I combed through the Sticky on ALS and Why You Don't Have it!

25 unique, credible posters worried about ALS

9/25 "lost to follow up" / not enough posts (c'mon people, help a stats person out and stick around on this site!)
4/25 "probably not" / right at 2 year past symptoms threshold
12/25 "definitely not" - still alive, still have HA!

May I note that my own twitching disappears entirely while I chase down stats on all our collective twitching. Maybe I have found the cure!

[Mikeyofboro]

Super post ! Love a bit of data and helps me realise that the chances of any of our worries being serious is low

[kyllikki]

Hello fellow Benign Twitchers!

I wanted to come back again and update that my twitching has reduced drastically in the past month.
I started taking vitamins, stopping testing my muscles every few minutes, and started to look for things that would make me happy instead of miserable, and voila! Things got better.
This isn't to say I have cured my HA -- I have not -- but I have got off the "what if" train for ALS specifically, at least.

Then last night I also had a bit of a bolt out of the blue from a documentary I was watching on Channel 4 -- the one where they follow a house through its whole history
There was a super brief moment in the programme where they described the shell shock men who fought in WWI experienced, and they showed some footage of two young men
They twitch and jerk uncontrollably, in a way that any neurologist would surely describe as outright myoclonic. It was very hard to watch
But suddenly I realized -- that's their own brain plus a bunch of objective psychological trauma doing that, not an organic disease
If it can happen to them and be so dramatic, what's to stop that from happening to us, at a much smaller scale?

Be kind to your mind, it does a lot to your body...