Back down the ALS rabbit hole i'm afraid :(

[Ellebel 67]

I have lots of HA my whole life, but nothing has been as bad as the ALS rabbit hole. It started 4 years ago and took me at least a year to get slightly better and two years to climb out completely. the past two years i actually had hardly any twitching. Some pops here and there, a pec that would go for a day, but thats it. Untill last weekend........

Last friday or saturday i noticed my thenar pad *(the fleshy part under the thumb) was twitching quite often, especially upon waking up. Big thumpers that moved the thumb and would keep going for 10 mins or so. By monday, i really became aware and started looking at the muscle. I realized it was twitching way more than i could readily feel (more of a slight tickle), pretty much after every time i moved the thumb. After that i got a bit nervous. Then did the unthinkable: googled again and started looking with a flashlight which made me realize the damn thing is actually twitching 24/7 and multiple times a second. it just keeps going, only the volume goes up and down. F*ck, never had that before. One so extremely steady and often. almost a week now. Also, being excerbated by movement of the muscle, isnt that a bad sign? Shit, im in trouble. Mentally for sure, but maybe also physically. Feel like i am just waiting for the rest of the hand and arm to join the circus which would compare perfectly to an ALS case ones read about on a (BFS) forum. I can actually feel the rest of my arm tickling away already, like its starting with fine fine twitches. 

 

I did not expect me to get this bad again over twitching. i thought i was done by that after 4 years. But nooooo since it was gone i feel like this is 'new' and must be bad. Also, i hardly ever twitched above the waist before so extra scary.

Please, i am drowning here... get me out of this hole!!

[Bobnnat 496]

Hi Elle,  sorry to hear you’re going through this again. ALS doesn’t start like that. By the time you have twitching the motor neurons are compromised and you’re unable to do things, meaning actual weakness. Go hold a cup of coffee. Go turn a key in your door or car with the hand you’re concerned about. When you can do this, it’s PROOF this is not what you fear.

Can you climb stairs? Get up from a seated position? Walk and not fall down? Then you have no weakness in the lower portion either. 

You’ve got to fight this Ellebel. I know our HA brain and how we react. It’s got to be one of the worst forms of anxiety. But you’ve done this before and you can do it again but please don’t let this go on. BTW we all have so called mini twitches made awfully worse by stress. Reach out to me any time.

Bob
 

 

[MARC 431]

My old boss/friends wife passed away in December 2020 of ALS at 62. Her first sign was uncontrollable hand movement like she was waving goodbye. She had no symptoms like yours. 

[Ellebel 67]

Thanks @Bobnnat and @MARC for reaching out!!  The funny thing is, i acutally KNOW you are right about this. Its 95% of the time not how it starts, in an already rare disease. I just dread i read about the (RARE!) cases where it did. Googling is sooo bad for us *(me), but its somehow like an addiction that always ends up making things worse. I will fight this and hopefully climb out a bit sooner than after another year lol. I need to remember allll those other twitching hotspots that made me super nervous (THIS TIME IT MUST BE BAD BECAUSE......) and figure i didnt have anything then either. My brain is just not there yet..  

[PennyPanic 276]

My thumb twitches ALL THE TIME...mostly when I'm over tired or over stressed. I can literally watch it twitch. My mom has reported the same thing happens to her. I've had thumb twitching in particular for over a decade. I have twitches other places too including my eye, my lip, all around my body....even my tongue once during a very dark episode in my life. When the stress dies down, the twitches go away. When the stress goes up...I twitch all over. I also twitch more if I have too much caffeine. It used to scare me...esp one episode of twitching EVERYWHERE that lasted for 6 months. It went away when I switched brands of coffee...too bad because I loved that coffee...but it was just too much twitching. I hope I've helped.

[Bobnnat 496]

Elle, statistics are our friends. First off, it’s a very rare disease. Second it’s rarer in females than males. Third it typically strikes in later life like 60-70+. Most importantly, with about 30,000 cases a year in the US (I know you’re in Europe but numbers are the same), you’re talking about a 5% subset which comes to 1,500/year.  That lessens even more due to your gender and age. 
 

Compare those million + to one odds with an ailment you 100% do have..anxiety with its lovely plethora of symptoms including, high up on the list twitching, shaking, tremors, etc.  As I know I mentioned in an earlier post on some other matter, a line my GP said to me when I was having a HA crisis in his office about XYZ disease, he said “This is bullshit, you know?”. That was all I had to hear and I walked out able to drop it.

Ellebel, this is bullshit, you know that.

[MARC 431]

5,000 newly diagnosed cases of ALS yearly, with 30,000 total cases existing at any one time. 

[Bobnnat 496]

1 hour ago, MARC said:

5,000 newly diagnosed cases of ALS yearly, with 30,000 total cases existing at any one time. 

Correct!!  My bad so 5% is 250

[MARC 431]

I once asked my physician about a carcinoid tumor and he said I have almost a better chance of being struck by lightning. 

[AriaRen 19]

Hey Ellebel

 

I have the exact same fears, been twitching for over a year now, and it's taken me so long to accept that I'd have lost the ability to do things by now if it was serious. I still have my moments, I've had to stop drinking alcohol as I get anxious and start worrying about it again 🙃 but we both know the facts. We've both read so much about it that we know deep down it's not the worst case scenario. 

 

You've got this, you're just going through an anxious spell, don't let it take over like it has before. Mind over matter ❤️

[Ellebel 67]

Thanks @AriaRen @MARC @Bobnnat

 

@AriaRen I know i even told you a couple of times to not worry. Isnt it hypocryte?!

@Bobnnat Thnx that does provide some clarity. 

 

I know i have anxiety and i know anxiety can cause this. hell, it has been caused for 4 years lol. But this twitch is soooooo different. It's fine, flickering, super rapid, nearly invisible tot the naked eye 90% of the time. EXACTLY how 'they' describe twitching in ALS (as opposed to in BFS where it is slower, readily visible and on and off). My thenar goes on literally 5 times a second every second of every day since say 10 days now. Its maddening! I am beyong myself with fear..

[Doug97 19]

I've had fine, flickering twitches for decades. Especially in the thumbs. So have other people I've asked. It's normal. All my twitching gets way worse when my anxiety ramps up, same as everyone else who worries about it.  I'd bet my life savings you don't have ALS.