View Full Version : Please Help **ALS Fears**
Good afternoon. I am new here, so excuse me if I make a mistake in rules. I am a 40 year old male.
So it all started about 12 weeks ago, with a twitch in my bicep. That persisted for a couple days then went away. Then about 10 weeks ago I started back exercising (biking, running and softball) after a month off from a lower back injury (sciatica), I also have cervical spine pain and degeneration, phase II.
Anyway, the next day after I started exercising I woke up to my calves twitching away, bilaterally. No biggie, I had just exercised. Well, they didn't go away after a couple days, so I made the mistake of googling, which has led me down a terrible ALS fear rabbit hole. For the most part the twitching remains in my calves, and I am still able to run, bike, play softball and coach my son's soccer team. When I flex my calves it stops the twitching, and it is also noticeably absent when I am using the muscle. I did have a few days where it went away, but it came back. I do have occasional twitches in my quads, tricep and glutes, but nothing consistent. I went to my internist, who is well aware of my profound health anxiety, and they gave me a clinical exam, which revealed no issues.
I feel like I am just waiting for the weakness to set in. I envision myself in a wheelchair in a year, my young children watching helplessly as I waste away. It is a terrible existence. I am seriously just getting by emotionally every day.
I feel like I am dying, I spend my days self testing, standing on toes, walking on toes, walking on heels, running up stairs, doing box jumps, and much much, much more.
I wonder if anyone here has had the same experience, and if so how did you finally get past it?
Any input would be GREATLY appreciated!
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21-09-16, 23:07
This post goes on a well established path: description of a particular fear and symptom or set of symptoms, followed by some rational thought about what might really be going on, and ending with another helping of fear for the disaster about to happen.
The thing is, the description you've given of your symptoms is not generally how ALS presents. It usually starts with very focused twitching in a specific locality and it doesn't go away. Often, it doesn't even involve twitching so much as a general sense of weakness in an extremity and/or a lack of responsiveness from or control of that extremity.
What you are describing sounds like plain old muscle twitches triggered by exercise, stress and, you know, being a living breathing human. ALS is a pretty rare condition and you don't want to fall into the hole of constant body scanning and worry about what every feeling could mean when you are highly unlikely to get this admittedly cruel and pernicious disease.
Not to mention, you've also had the all clear from a doctor. What more do you need than that?
Hope this helps. And don't Google!
Twitching is not diagnostic of any condition actually. Essentially unless accompanied by other things like clinical weakness hyperreflexia or atrophy it is essentially benign. ALS seldomly if ever presents itself with twitching actually the ALS medical community suggest that the incidence of people diagnosed with ALS with twitching as their initial symptom is less than 1% of cases, other professional refuse to even acknowledge these incidences. It would sound like you have what is termed bfs or benign Fasicuclation Syndrome.
I get twitching all over have been since February this year. I am also like you worried of MS and ALS. Mine all started after I was googling stuff and got myself worked up thinking I was having a heart attack from the chest pains and numbness and panic attack I woke up with. I went to ER and they said I was fine just anxeity. 2 weeks after all that the twitching came First one calf then the other. Now it is pretty much everywhere I can twitch from my arm then 1 second later be in my leg. It sucks to think you have one of these diseases. I don't go one day not thinking about it. Or 1 hour really I wish the twitching would stop and not return. I try my best to think it is just anxeity ( and I have been to the doctor 4 times already this year) they look at me like why are you here pretty much every time. I've had 2 CBC come back completely Fond some other blood work and urinalysis all fine. I think with ALS you would lose weight a lot. Muscles dying would cause extreme we loss. But what gets me with MS I don't think you lose any.
It's crazy what we go through and think we have on a daily basis. If you need someone to talk to I am here. I live with it everyday like yourself for the past 6 months. The thing that helps me the most is both diseases are rare and I didn't get any twitches till 2 weeks after I had a break down at the ER so what is the likely hood that it is some really rare disease or anxeity based being I know I'm having anxeity. And why would this rare disease appear after my breakdown thinking I was having a heart attack? I try to stay hopeful and be positive hoping they will go away.
Currently struggling with this myself as I've just lost a friend to ALS.
What i know from his diagnosis is that twitching was 100% a periphery symptoms, started with profound weakness in his hands.
See, it's really easy to say this but for me to believe it is so much harder.
Anxiety causes twitching and it causes twitching so many more times than ALS so why can't i believe that? Anyway, if you can do all the things you can usually do and can continue you to do it, then its not ALS.
Easy to say though.
Currently struggling with this myself as I've just lost a friend to ALS.
What i know from his diagnosis is that twitching was 100% a periphery symptoms, started with profound weakness in his hands.
See, it's really easy to say this but for me to believe it is so much harder.
Anxiety causes twitching and it causes twitching so many more times than ALS so why can't i believe that? Anyway, if you can do all the things you can usually do and can continue you to do it, then its not ALS.
Easy to say though.
Totally get it. What I do know, even though some days it doesn't matter, is that twitching is only a concern if accompanied by weakness, like not being able to walk on toes, open jars, turn keys, etc. I also know, from the MASS reading and research I have done, that like stated above, less than 1% of cases MAY present with twitching first, but what we don't know is if upon examination, weakness was found, or if the patient ignored it.
After several months of twitching, I have been told by many with BFS that there would be profound weakness if it was truly ALS. It is very difficult some days to remember this. Muscle twitching is a result of dying/dead muscles. Therefore, there would be unmistakable weakness. See, I know, but my mind is always full of the worst case.
Its a hard road, so I appreciate everyone taking the time to respond.
---------- Post added at 09:50 ---------- Previous post was at 09:46 ----------
I get twitching all over have been since February this year. I am also like you worried of MS and ALS. Mine all started after I was googling stuff and got myself worked up thinking I was having a heart attack from the chest pains and numbness and panic attack I woke up with. I went to ER and they said I was fine just anxeity. 2 weeks after all that the twitching came First one calf then the other. Now it is pretty much everywhere I can twitch from my arm then 1 second later be in my leg. It sucks to think you have one of these diseases. I don't go one day not thinking about it. Or 1 hour really I wish the twitching would stop and not return. I try my best to think it is just anxeity ( and I have been to the doctor 4 times already this year) they look at me like why are you here pretty much every time. I've had 2 CBC come back completely Fond some other blood work and urinalysis all fine. I think with ALS you would lose weight a lot. Muscles dying would cause extreme we loss. But what gets me with MS I don't think you lose any.
It's crazy what we go through and think we have on a daily basis. If you need someone to talk to I am here. I live with it everyday like yourself for the past 6 months. The thing that helps me the most is both diseases are rare and I didn't get any twitches till 2 weeks after I had a break down at the ER so what is the likely hood that it is some really rare disease or anxeity based being I know I'm having anxeity. And why would this rare disease appear after my breakdown thinking I was having a heart attack? I try to stay hopeful and be positive hoping they will go away.
Thank you, I do need someone to talk to sometimes, as I think most of us do. My wife doesn't understand my anxiety, nor do I expect her too, but it is a hard, depressing road some days.
Totally get it. What I do know, even though some days it doesn't matter, is that twitching is only a concern if accompanied by weakness, like not being able to walk on toes, open jars, turn keys, etc. I also know, from the MASS reading and research I have done, that like stated above, less than 1% of cases MAY present with twitching first, but what we don't know is if upon examination, weakness was found, or if the patient ignored it.
After several months of twitching, I have been told by many with BFS that there would be profound weakness if it was truly ALS. It is very difficult some days to remember this. Muscle twitching is a result of dying/dead muscles. Therefore, there would be unmistakable weakness. See, I know, but my mind is always full of the worst case.
Its a hard road, so I appreciate everyone taking the time to respond.
---------- Post added at 09:50 ---------- Previous post was at 09:46 ----------
Thank you, I do need someone to talk to sometimes, as I think most of us do. My wife doesn't understand my anxiety, nor do I expect her too, but it is a hard, depressing road some days.
Mate, 100% with you on all this!
I've been tearing myself up for months over this fear, it very prevalent on my mind due to seeing a very close friend suffer with this over the last 16 months.
It's just so hard to accept the logic and I've been destroying my relationships with my partner and friends over the fact that 90% of the time ALS is on my mind. Nearly lost my job too.
Anxiety is just the most awful thing, its turned me in to a shadow of the person i was
I'm at the end of my tether really, so so depressed about who and what i am now. Sorry to turn this around, just venting.
But, on a positive note, you are 100% not alone and like the other poster if you ever wanna chat then that might be good, I find talking about it helps rationalise things a little better.
You're alright dude!
Yeah I get some numbness too like my big toe on left foot was numb some but it went away. and my left thumb had been numb also but it has went away also. I heard anxeity can cause numbness. I did push-ups last night just to see if I could still do them. I did what I was expecting for not doing them in so long. I'm not the most active person lately so I feel sore and weak sometimes but nothing out of the ordinary I don't think.
My twitching will just not go away and sometimes I think I notice it more after drinking a coke or sweet tea that has caffeine in it. I use to be a heavy coke drinker like 5-7 a day but cut them all out when I was going thru the panic phase back in Jan. But now I do drink a couple a day. But still a lot of water.
I have also did the math and to have ALS is a 0.00006198 chance in the US. But anxeity is over 40 million people at once. Which is over 10% of the US population.
---------- Post added at 18:58 ---------- Previous post was at 18:45 ----------
I went to Doctor about 2 weeks ago and she ran some more blood work and did a urinalysis on me which both came back fine and she had me pull on her arms and squeeze her fingers and stuff like that. She said I'm fine. It was hard for me to accept it really just increased my anxeity for about a whole week after that appointment. I hate going and building up the nerve to go to be told I'm fine even though I'd rather be fine any day it's just hard to accept
Mate, 100% with you on all this!
I've been tearing myself up for months over this fear, it very prevalent on my mind due to seeing a very close friend suffer with this over the last 16 months.
It's just so hard to accept the logic and I've been destroying my relationships with my partner and friends over the fact that 90% of the time ALS is on my mind. Nearly lost my job too.
Anxiety is just the most awful thing, its turned me in to a shadow of the person i was
I'm at the end of my tether really, so so depressed about who and what i am now. Sorry to turn this around, just venting.
But, on a positive note, you are 100% not alone and like the other poster if you ever wanna chat then that might be good, I find talking about it helps rationalise things a little better.
You're alright dude!
Exactly how I'm feeling. I could have written this. Are you doing any better?
Sounds nothing like ALS. Move on.
Exactly how I'm feeling. I could have written this. Are you doing any better?
As most know, suffering from Healthy Anxiety is awful. I am two and a half years in to my twitching and still twitch. More when I exercise. I'm on to oral cancer concern now. It's terrible
I had a MS health anxiety spell about 7 years ago... a relative died of it, it was awful, there was so so many symptoms, I googled and spiraled, I had twitching, numbness, burning skin, vision floaters so so many things over and over the more I worried the worse it got and the more it fueled my worries, I kept saying to my family by u don’t understand I wouldn’t be worried if I didn’t have ALL these symptoms!!!!
In the end I had an MRI ... nothing ,.. absolutely nothing
And from that day forward ... no more symptoms, my point is the mind is incredibly powerful and can make so many symptoms which fuel anxiety.
The thing that worked for me is healthy diet, lots of CrossFit and also socializing and trying to take my mind off it all - it’s your mind ... I promise x
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