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Anyone have tips for overcoming ALS fear. It seems to be pretty common around here.
I have widespread muscle twitching, of course I have researched and consulted Dr. Google. I have had to twitches for about two to three years maybe longer. I have perceived weakness in my hand sometimes. Every morning I do squats and push ups and other excerxises to check for weakness. I just can't shake this fear of ALS. It's beginning to negatively effect my marriage.
Any help would be greatly appreciated
Anyone have tips for overcoming ALS fear. It seems to be pretty common around here.
I have widespread muscle twitching, of course I have researched and consulted Dr. Google. I have had to twitches for about two to three years maybe longer. I have perceived weakness in my hand sometimes. Every morning I do squats and push ups and other excerxises to check for weakness. I just can't shake this fear of ALS. It's beginning to negatively effect my marriage.
Any help would be greatly appreciated
You wouldn't be capable of doing that type of thing every morning if you had ALS. Furthermore, it's quite possible that the daily excersise is actually what's causing the muscle twitches.
Scotttt (with 4 t's :))
If you've been reading, you see it's a pretty common fear that comes in waves on the boards. Also, you've probably seen that reassurance is pretty useless with people suffering from this fear. The ALS rabbit hole is a deep one for sure!
One of the most powerful tools to overcome this and frankly any life situation is "acceptance". How one gains that is as individual as a fingerprint but it can be done. Acceptance that every bit of evidence points to the fact you don't have ALS. Acceptance in the fact that we cannot control everything in our lives. And most of all, acceptance that you do have an illness called anxiety. Accepting that and working on overcoming it is something that must come from you. If you're struggling to the point that it's affecting your marriage and life, then seek help with a mental health professional that can help you re-shape the way to think and process your thoughts. Talk to your GP about the possibility of meds.
YOU are the key to helping yourself.
Positive thoughts
Nowhere in medical literature has someone twitched for 3 years and ended up with ALS. You clearly have Benign Fasciculation Syndrome, as do I and many others here. It seems to affect anxious folks the most. My advice is to live like you're well. Act well, and you will feel well. Ignore the twitching. I was in the ALS rabbit hole, nasty and deep, and now I'm not. I stopped the compulsions which fed my ALS obsession. I stayed occupied and my mind stopped the fear on its own. Yours can too.
I have widespread muscle twitching
ALS doesn't present as twitching.
Every morning I do squats and push ups
You wouldn't be able to do gym stuff - your muscles simply wouldn't work.
I have perceived weakness in my hand...
Weakness isn't "perceived", things just stop working.
...sometimes
It doesn't come and go.
I have had to twitches for about two to three years maybe longer
You wouldn't have vague symptoms of it for a few years. You'd be seriously ill.
It's also an incredibly rare disease that shouldn't be anyone of our radars as a likely possibility.
"Dr Google" hasn't told you that you have this. You've managed to tell it to yourself. I only know the above from being on this site, and having exactly same layman's sources as you do. Google is just as capable of telling you that you don't have it - your anxious mind is just cherry picking the bits that scare you. Your vague symptoms do not in any way equate with having a rare and dramatic disease.
Most HA sufferers eventually entertain the thought that they have ALS. Some get obsessed with the possibility. Listen to what axolotl and josh are telling you. You don't want to become one of those people who start obsessing over ALS. Search out some ALS threads here and you'll see why.
3 years twitching, you have nothing to worry about. Ignore them and enjoy your day.
PASchoolSyndrome
21-02-17, 21:33
My fiance's thigh was twitching so much in bed the other day that I could feel it so I asked him to stop because I was trying to sleep. He didn't even notice that it was happening. We pay way too much attention to our bodies.
Thank you all. You have given me a lot of calm, clarity and motivation the put this fear to rest once and for all.
ALS is failing not feeling. You have to remember that. And it's very very very rare.
I know muscle twitches are very common, and generally benign.
However, I cant help but think that my twitches are different. Sometimes I have large noticeable twitches, and sometimes I have small very fine twitches. I can still feel them but they are faint.
It is these small twitches that give me anxiety, since I have read that ALS twitches are small and fine. They are quick, one or two pulses and they seem to dart around my body.
I have had the big twitches for years, but I am not sure about the small ones. I don't know if they have always been there and I am just noticing them or if they are new.
Any info or help would be greatly appreciated.
As with your previous thread.
Twitching is only ever a part of ALS long after the muscle has stopped working.
Keep that as your mantra!
Thanks. I hate how irrational this ALS fear is. I know all the facts about it, but I cant get my brain to buy in.
Ive been able to shake all the other fears from cancer to heart disease, but I just cant shake this one.
Mommyof2boys
23-02-17, 16:25
I am literally right here with you man.... Almost 5 months of twitches and no clinical weakness but I still can't shake the fear. It started out all over both legs but has become more localised in my left foot/ankle and they dart around there. I have some in my face, eye, lips, fingers, back, stomach and sides every once in a while but the left leg is a constant. They are pretty fine, not where you can see them all the time but some are more pronounced. I had a bad one in my left side of my left thigh yesterday that felt like constant cramping and tremors and I almost had a heart attack. I planned on going to the clinic but I am currently way too busy with kids and school to really go... It's so hard to think rationally about it. However I do have a grandmother who passed with als so it's harder for me... I hope you can get through it and me too because I literally feel as though I have lost months of my life because of this and I'm getting married in 7 months and can't even get excited about it or plan it...
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
Elen
Anyone else have faint/brief twitches? They last maybe a second or two usually when muscle is at rest.
Im having a particularly bad anxiety day if y'all couldn't tell. lol
If you look at the very bottom of the page, you'll see related threads and a search will yield literally hundreds of threads on the subject :)
Positive thoughts
Dude I've had all types of twitches. Small dimples to big thumpers . Ignore them and go about your day that's the only way to shake the fear.
Yeah, I've literally had them from head to toe and everywhere in between. Big ones little ones violent ones kind ones weird ones. You name it.
I've been twitching for about 20 months now with no weakness.
The fear you have is shared by so many people on this board. It's so common. If all you have is twitching with no weakness, then you have nothing to fear. Honestly, I would trade places with you in a heartbeat if all I had was just twitching.
By the way, DO NOT GO TO THE ALS FORUMS. That will only feed your irrational fears. Biggest mistake I made was going over there and researching about ALS. It's damn near ruined my life. Best think you can do is trust that they are benign and don't look back. Seek professional help if you feel like your fears are consuming your life.
Hang in there bud!
By the way, DO NOT GO TO THE ALS FORUMS. That will only feed your irrational fears.
Not only that, but many with ALS fears have joined and posted and have been told it's not ALS. Despite this, they persist with additional "But what about" and "What If" posts. It's HIGHLY disrespectful to those actually suffering and will result in being banned.
Positive thoughts
I'm dealing with Gastritis-like symptoms for the past two weeks, so I came here to see what's up, because this is what people like us do - and came across this thread.
There is nothing like another 'illness' that you can feel to get your mind off ALS.
When my twitches first started, I went on the internet and discovered that I had ALS. It was at this time that I said, well, shit. I should probably start making a financial plan, you know, for my impending demise. So it was with much trepidation that I told my then-fiancée, listen, baby. I'm not going to be able to make it to our wedding next year.
She looked at me and continued measuring the length of her dress - wasn't taking me seriously at all. So I came here, and other various internet forums.
I came here and I said listen guys, my doctor thinks I'm nuts, my fiancée won't discuss my health with me - and now you guys are telling me I don't have ALS. What the hell, people? I came here so you guys could tell me that I had ALS and that you're there for me.
I'm telling you, I twitch practically everywhere. Small twitches, big twitches, twitches that last forever in a specific "hotspot", twitches that are too fine to see, twitches that move my thumb and make me accidentally hit my spacebar. I'm dying here, and everybody around me thinks I'm nuts.
Thanks folks, my funeral will be the final "f- you, I told you so" in all your faces.
Then something weird happened - I kept twitching, doing my unusual strength testing which sometimes involved rubber bands, the stairs, some Chinese "grip" gadget that rendered my hand strength into easy to read abstract numbers that I got off eBay for $5 - but somehow I, in the midst of twitching and dying, made it to my wedding.
To my embarrassment, my best man at the wedding speech, had a line that said "we all know enceladus and how anxious he is, he himself couldn't imagine being here, what with his "muscle twitches.."..
Yeah, okay, Tom. Yeah alright, I'm here now, sure, I'm enjoying my wedding but who knows if I'll make it to your wedding next year?
Mommyof2boys
24-02-17, 17:10
I have noticed on this forum many people suffering from twitches are or were engaged when the symptoms began. I got engaged shortly before mine became super noticable and I have told my fiancee that I don't know if I'll be able to even walk down the aisle. I laughed at your story because I can definitely see my maid of honor doing what your best man did! I just wonder if this twitching is what people call the "jitters" when you're about to be married? :P I really hope so...
Hello,
First off thank you all for your posts and stories, they have been a big help.
I am still in the mire of ALS anxiety, and I made an appointment with my doctor to finally sort this out. I have been reading posts on this forum and trying to stay off google.
These small twitches in my calves are really getting to me. They are single pops and are very small. They seem to only occur at rest and they don't last long enough for me to really see them. they are in my calves mostly, but they dart back and forth between right and left, and sometimes in other parts of my body.
I am starting to get really frustrated/angry with myself for letting this impact me so much.
If anyone has some advice or tough love, I sure could use it.
Don't beat yourself up.
I was in your same shoes until finally I reached a breaking point and made an appointment with my PCP for Monday morning to investigate further particularly the mental health component off all this right now. I've chased the physical component for two years and am just now confronting the mental component.
Don't be like me and wait this long to get some help. If you are that upset with yourself and it's impacting your life negatively, talk with your PCP and about seeing a psychiatrist.
Be proud that you are taking action!
Hi
You will see I have a pretty lengthy few posts about ALS fears and all the kind and great replies I received.
I would love to say I'm better but I'm a damn sight calmer than I was. I'm on Prozac at 60mg this has stopped the compulsive checking. I am at cbt only second week in but first week I was to monitor how often I was looking in the als site. Basically it was too often to write fine but was pages and pages in my history.
So this weeks task is not to look on it on the morning. Only been since tue. But I have not looked at it in the morning at all and I ha e boy even looked at all today. Just got to build it up.
Does my mind still think I possibly have als? I wish I could say no but it does. Even after numerous neuro visits and a clean emg. But I know my anxiety is also driving my thoughts so trying to tackle my thinking. I still have symptoms and my foot, ankle and calf have become progressively sorer. In my mind that is because the joints are all sore from the weak muscles. But I can still do all the neuro tests and I do think that I've possibly injured myself from doing these over a period of about 8 weeks repeatedly. I am also post natal so my joints and ligaments are very lax at the moment due to hormones.
Anyway was just to say I empathise with you. The state I was in was horrific.
I can't remberwho said it. It agree try to live like you are well and you will feel more well. I have plans everyday to keep me busy as I'm on maternity ugh leave. It exhausts me but I know it's what my brain needs at the moment x
I'm dealing with Gastritis-like symptoms for the past two weeks, so I came here to see what's up, because this is what people like us do - and came across this thread.
There is nothing like another 'illness' that you can feel to get your mind off ALS.
When my twitches first started, I went on the internet and discovered that I had ALS. It was at this time that I said, well, shit. I should probably start making a financial plan, you know, for my impending demise. So it was with much trepidation that I told my then-fiancée, listen, baby. I'm not going to be able to make it to our wedding next year.
She looked at me and continued measuring the length of her dress - wasn't taking me seriously at all. So I came here, and other various internet forums.
I came here and I said listen guys, my doctor thinks I'm nuts, my fiancée won't discuss my health with me - and now you guys are telling me I don't have ALS. What the hell, people? I came here so you guys could tell me that I had ALS and that you're there for me.
I'm telling you, I twitch practically everywhere. Small twitches, big twitches, twitches that last forever in a specific "hotspot", twitches that are too fine to see, twitches that move my thumb and make me accidentally hit my spacebar. I'm dying here, and everybody around me thinks I'm nuts.
Thanks folks, my funeral will be the final "f- you, I told you so" in all your faces.
Then something weird happened - I kept twitching, doing my unusual strength testing which sometimes involved rubber bands, the stairs, some Chinese "grip" gadget that rendered my hand strength into easy to read abstract numbers that I got off eBay for $5 - but somehow I, in the midst of twitching and dying, made it to my wedding.
To my embarrassment, my best man at the wedding speech, had a line that said "we all know enceladus and how anxious he is, he himself couldn't imagine being here, what with his "muscle twitches.."..
Yeah, okay, Tom. Yeah alright, I'm here now, sure, I'm enjoying my wedding but who knows if I'll make it to your wedding next year?
Just wanted to chime in and say that you sir, win the gold star for making me pee myself from laugher on an anxiety forum. Never have I experienced this and I thank you for your contribution.
Also, as a side note, I've said it before and I'll say it again. This is not an elusive disease. This is not a disease that hides and plays around for months or years before showing its true face. It's mean, it's nasty, it's progressive, and it's merciless. All the people on this forum that have this specific phobia who have scoured the als sites and read the horror stories should know this. What we have is an obsession, not a disease. The quicker we accept that we are severely mentally ill and need help, the quicker we can get to recovering.
Again, thank you all for the help.
Today I have moved on to bulbar onset fear, which wasn't even on my radar before.
I lisp on S words, which I always have. I've also been biting my lip on accident when talking.
This is getting old.
---------- Post added at 15:40 ---------- Previous post was at 15:03 ----------
Any advice for bulbar fear?
Seems like a totally different beast.
Again, thank you all for the help.
Today I have moved on to bulbar onset fear, which wasn't even on my radar before.
I lisp on S words, which I always have. I've also been biting my lip on accident when talking.
This is getting old.
---------- Post added at 15:40 ---------- Previous post was at 15:03 ----------
Any advice for bulbar fear?
Seems like a totally different beast.
Move on its rare and if you had it doctors can't do anything for you anyways. Your going from one disease to another. We all did it with out anxiety. And so far we are all still living.
I know a man with bulbar. His initial symptom was waking up and slurring his speech so bad his wife and son thought he was severely intoxicated. When he told them he hasn't been drinking they rushed him to the doc thinking he had a stroke in the middle of the night (same day sick), he got referred to a neuro, and bam diagnosed with als that day (after a positive emg)
You do not have bulbar. Limb onset is obvious. Bulbar is ridiculously obvious.
Ok I am going to the doctor this afternoon to address both my twitches and anxiety.
Should I just come out and say that I have a deep fear of ALS or just tell them about my symptoms.
Also, Im considering trying some anti-anxiety meds. Any thoughts?
Hi Scott,
Tell them about your physical symptoms but also share with your doctor your anxiety if it's impacting your life. Be open and honest about everyone of your symptoms. Your doctor should be able to distinguish a serious clinical condition apart from the anxiety. Is your anxiety impacting your ability to focus? Are you continually researching on the internet? Are you constantly doing strength tests? If you answer yes to those questions you might need some CBT and/or meds.
I just had an appointment with my PCP today and am beginning on Zoloft. I'm also starting CBT soon as well. Hopefully, I'm on the road to recovery.
Hang in there!
Sorry to bump this but I just wanted to chime in that this thread has done a lot to help quell my current anxiety over twitching. I started twitching about 17 years ago after a viral infection and have fallen into the ALS rabbit hole many times.
Currently is the first time I've had a hotspot twitch for more than a few weeks and it freaked me the F out, but every day that passes it seems to subside a little more and actually started up in another place. That was actually oddly reassuring.
Everyone hang in there!
Doesn't everyone get random body twitches? I thought it was just part of being alive. It's the tongue twitches that freak me out
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