Lexi98
New member
- Joined
- Aug 23, 2024
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Previous thread here: Could this be ALS?
I’d like to sincerely thank ALL in this community for not only dealing with some of us who come here undiagnosed with anxiety but also for managing/dealing with the reality of ALS in your lives whether if you, a loved one or a friend has been dx’d it’s truly appreciated. May God be with you every single step of the way.
Keeping this as short as possible ~ I hope maybe anyone with a similar story can read this and find peace and a bright spot. But I do have a question for those who know more than I.
I started having bicep fasciculations in July 2024. Really scared me especially after googling. I came to this thread, Reddit etc. hyper fixated on it until I drove myself into a panic attack. Saw a neurologist after about 7 days of twitching. Clean clinical, clean emg, nothing special. Both of my calves joined in, and before long my body was twitching all over. Biceps, triceps, face cheeks, quads, hamstrings, calves, feet, hands etc. I was riddled with anxiety. I had all sorts of twitching too. Random pops, rhythmic pops which lasted a few mins, wave like ones under the skin that looked like worms, etc. I lost sleep and fixated on every single twitch.
About halfway through September I got another opinion from a 2nd neuro who gave me a clean clinical and assured me the likelihood of ALS was extremely low. I was 28 at the time, clean bloodwork, no weakness nothing failing, and in all her years she’d only seen 1 patient under 30 with ALS and it was familial. I left there a little relieved but when anxiety has its hold, the relief only lasts so long. So I decided from then on I’d attack my anxiety and train my brain to not let it take over my life. Thanks to many on this sub, I came to my senses and decided to live my life and not worry about it as much. In October I got married, and during the holidays I was so busy traveling that the twitches seemed to have left. I still deal with twitches here and there but it’s been nearly 6 months of twitching, no weakness to be found. Only carpal tunnel and ulnar neuropathy from the EMG. I am still working out, I am still living my life. To anyone who is struggling with anxiety and going down this rabbit hole, before you bother these people who are dealing with the real effects of ALS in their own lives, try to rationalize with yourself prior to sending the message.
I was in a very very dark spot and managing the anxiety is key for anyone dealing with what I went through.
Now for my questions. What I am left with are two/three main twitches I am curious if anyone in this sub has any familiarity with. I am seemed to be left with twitches which appear to be 100% self prompted via motion or specific movement.
1. I know a common place to twitch is between index and thumb fingers. When I flex my right index finger to the left the muscle on the top of my hand in between those fingers twitches out of control until I stop the movement
2. When I isolate my quads, I still get those wave/worm like fasciculations that don’t stop until I stop the isolation
3. The most recent twitch I’ve developed about 4 months ago is a left pectoral twitch which ONLY fires off it I flick my left thumb against my middle finger or my wedding ring. My pec will thump and mainly is felt towards the center of my chest but also the top towards my shoulder. This twitch started for a month, then went away for 2 months no matter how much I tried to prompt it. So I thought it was gone for good but now she’s back.
Has anyone, whether with ALS or not, heard about twitching which is 100% self prompted and not firing while at rest? I have no fear of ALS and am not particularly concerned, but asking just for my general knowledge and to help anyone who also may be dealing with this.
God bless you all. Sorry for the length of this post.
I’d like to sincerely thank ALL in this community for not only dealing with some of us who come here undiagnosed with anxiety but also for managing/dealing with the reality of ALS in your lives whether if you, a loved one or a friend has been dx’d it’s truly appreciated. May God be with you every single step of the way.
Keeping this as short as possible ~ I hope maybe anyone with a similar story can read this and find peace and a bright spot. But I do have a question for those who know more than I.
I started having bicep fasciculations in July 2024. Really scared me especially after googling. I came to this thread, Reddit etc. hyper fixated on it until I drove myself into a panic attack. Saw a neurologist after about 7 days of twitching. Clean clinical, clean emg, nothing special. Both of my calves joined in, and before long my body was twitching all over. Biceps, triceps, face cheeks, quads, hamstrings, calves, feet, hands etc. I was riddled with anxiety. I had all sorts of twitching too. Random pops, rhythmic pops which lasted a few mins, wave like ones under the skin that looked like worms, etc. I lost sleep and fixated on every single twitch.
About halfway through September I got another opinion from a 2nd neuro who gave me a clean clinical and assured me the likelihood of ALS was extremely low. I was 28 at the time, clean bloodwork, no weakness nothing failing, and in all her years she’d only seen 1 patient under 30 with ALS and it was familial. I left there a little relieved but when anxiety has its hold, the relief only lasts so long. So I decided from then on I’d attack my anxiety and train my brain to not let it take over my life. Thanks to many on this sub, I came to my senses and decided to live my life and not worry about it as much. In October I got married, and during the holidays I was so busy traveling that the twitches seemed to have left. I still deal with twitches here and there but it’s been nearly 6 months of twitching, no weakness to be found. Only carpal tunnel and ulnar neuropathy from the EMG. I am still working out, I am still living my life. To anyone who is struggling with anxiety and going down this rabbit hole, before you bother these people who are dealing with the real effects of ALS in their own lives, try to rationalize with yourself prior to sending the message.
I was in a very very dark spot and managing the anxiety is key for anyone dealing with what I went through.
Now for my questions. What I am left with are two/three main twitches I am curious if anyone in this sub has any familiarity with. I am seemed to be left with twitches which appear to be 100% self prompted via motion or specific movement.
1. I know a common place to twitch is between index and thumb fingers. When I flex my right index finger to the left the muscle on the top of my hand in between those fingers twitches out of control until I stop the movement
2. When I isolate my quads, I still get those wave/worm like fasciculations that don’t stop until I stop the isolation
3. The most recent twitch I’ve developed about 4 months ago is a left pectoral twitch which ONLY fires off it I flick my left thumb against my middle finger or my wedding ring. My pec will thump and mainly is felt towards the center of my chest but also the top towards my shoulder. This twitch started for a month, then went away for 2 months no matter how much I tried to prompt it. So I thought it was gone for good but now she’s back.
Has anyone, whether with ALS or not, heard about twitching which is 100% self prompted and not firing while at rest? I have no fear of ALS and am not particularly concerned, but asking just for my general knowledge and to help anyone who also may be dealing with this.
God bless you all. Sorry for the length of this post.
