ALS fears have me in a free fall (First post)

[Loki83]

I’ve had extreme health anxiety since my grandfather died of colon cancer when I was 8. I’m 32 now and have had every scan or test you can think of. I was on a good streak of feeling normal or worry free until my left eye started twitching and then I felt a twitch in my right arm in bed one night. I couldn’t resist google and of course landed on ALS first thing. I become obsessed and found every symptom and every story of a young person being diagnosed. Last night my stomach hurt so bad I drove myself to the ER and blood work and cat scan was perfectly clean. They sent me home and now I’m in a free fall. My arms and legs feel so heavy and weak, I feel like I can barely lift them. I feel twitching and jerky feelings all over my body, it feels like my jaw gets tired chewing and swallowing feels difficult. I can’t stop thinking how I’m going to waste away and never see my children grow up or grow old with my wife. I’ve even convinced myself my right arm looks like it lost muscle mass. My head feels heavy and I just feel off, I’m so exhausted but I can feel my arms and legs being restless and tired that I don’t think I can sleep with this feeling. Any tips to make this pass , I don’t know what to do? It doesn’t feel like I’ll feel the same or not weak ever again.

Before I went to the ER I was constantly waking up in the morning with my arms feeling tired like I could barely get out of bed on top of the twitching everywhere, so my mind is racing how it’s getting worse and the ALS was causing the stomach problems too.

Thanks

 

[matisworried]

I've been in your shoes. this really sounds like your anxiety is playing awful tricks on you.

please read this. hopefully it helps put your mind at ease.

IS MY TWITCHING RELATED TO ALS?

 

[Loki83]

I've been in your shoes. this really sounds like your anxiety is playing awful tricks on you.

please read this. hopefully it helps put your mind at ease.

IS MY TWITCHING RELATED TO ALS?

I've been in your shoes. this really sounds like your anxiety is playing awful tricks on you.

please read this. hopefully it helps put your mind at ease.

IS MY TWITCHING RELATED TO ALS?

I really appreciate that, it’s so hard to stop the snowball of anxiety. I raised both legs up and could swear I see more muscle lines like they are wasting. I assume if muscles were wasted in my legs and arms I could not have played basketball last Sunday without incident? I’m so happy I found this forum and really appreciate your response. I’m going to see a behavior therapist soon. I can’t keep batting this solo.

 

[E.B]

Certainly sounds like anxiety and not als

 

[Kari85]

I feel you on the body weakness/heaviness. I’m ok as long as I’m lying down but as soon as I get up and move around I feel like I’m going to collapse. I’ve been feeling this way since mid Sept. Seems like it will never end.

 

[Loki83]

I’ve always had anxiety and worry involving cancer, but this is the first time ALS has caused a problem and it’s the worst episode I’d ever had. Can it take days or even weeks for the symptoms to subside even after calming myself down? I Keep trying to say calm down and the symptoms will go away but if they linger I’m afraid it will send me right back into the cycle.

I feel you on the body weakness/heaviness. I’m ok as long as I’m lying down but as soon as I get up and move around I feel like I’m going to collapse. I’ve been feeling this way since mid Sept. Seems like it will never end.

I’ve dealt with it in the past but not this extreme, including numbness and tingling, and it ended up being a pinched nerve in my neck due to poor computer posture. Had myself convinced it was ms or a tumor. It’s never the worst case. I keep telling myself it’s always been nothing or minor every single time and the symptoms always fade. Just got to keep moving and pushing forward. I find the more active I am the better they feel, just sitting or laying and thinking about it intensifies it.

 

[Bobnnat]

Hi Loki.

So much to tell you. All good. First, twitching is so very normal. We all twitch. My left eye has been twitching for years and when a stressed moment comes on, it literally starts twitching. Twitching is caused by anxiety, use of the body part, or...for no reason at all.

Next..Anxiety will cause you to “feel” weak, think body parts are losing muscle mass, think one arm, leg etc is smaller than the other. Ive realized how that “belief” of what’s called body dysmorphysim is similar to what a person goes through with anorexia. They are positive they are fat. They see it! Only problem is, what they are seeing is not real.

You are 32. Typical age for ALS sufferers is in the 60s. At your age, the incidence is about 1 in 100,000. Don’t say, well I could be that one. You could be that one who wins the multi-million dollar lottery...but you won’t. If you heard of a slot machine that doubles your money 99.999% of the time, you’d play it till it broke, assuming you could get to it with the tons of people also wanting to play.

Finally, go ahead and test yourself. Climb some stairs. Go for a walk. Pick up a coffee cup. Unlock a door. When you are able to do these things, you do not have ALS. What you have is called perceived weakness as opposed to actual weakness.

We’ve all been there, either with this fear or others..many others in my case. But a “normal” person doesn’t think as we do. I’ll bet your wife, like mine gets really frustrated with you. She can’t understand how our mind works. Of course, she never will, will she?

Anyway, you are fine physically. Consider therapy if you haven’t before. Therapy, meds work for some. Not me, but maybe for you.

Bob

 

[Loki83]

Hi Loki.

So much to tell you. All good. First, twitching is so very normal. We all twitch. My left eye has been twitching for years and when a stressed moment comes on, it literally starts twitching. Twitching is caused by anxiety, use of the body part, or...for no reason at all.

Next..Anxiety will cause you to “feel” weak, think body parts are losing muscle mass, think one arm, leg etc is smaller than the other. Ive realized how that “belief” of what’s called body dysmorphysim is similar to what a person goes through with anorexia. They are positive they are fat. They see it! Only problem is, what they are seeing is not real.

You are 32. Typical age for ALS sufferers is in the 60s. At your age, the incidence is about 1 in 100,000. Don’t say, well I could be that one. You could be that one who wins the multi-million dollar lottery...but you won’t. If you heard of a slot machine that doubles your money 99.999% of the time, you’d play it till it broke, assuming you could get to it with the tons of people also wanting to play.

Finally, go ahead and test yourself. Climb some stairs. Go for a walk. Pick up a coffee cup. Unlock a door. When you are able to do these things, you do not have ALS. What you have is called perceived weakness as opposed to actual weakness.

We’ve all been there, either with this fear or others..many others in my case. But a “normal” person doesn’t think as we do. I’ll bet your wife, like mine gets really frustrated with you. She can’t understand how our mind works. Of course, she never will, will she?

Anyway, you are fine physically. Consider therapy if you haven’t before. Therapy, meds work for some. Not me, but maybe for you.

Bob

Thanks so much for all the info! I thought I was doing better and feel asleep normally last night, but woke up at 5:30 in a panic. My mind immediately started racing and felt hyperactive, a feeling of weakness started in my head and flowed to my toes, it feels like someone is standing on my chest. And the twitching is back. I’ve never had it wake me up before. I need to get passed this, I feel like I’m at rock bottom.

 

[Larii]

Apart from als being extremely rare, twitching is a huge misconception. I remember my neurologist - whos been practicing many years now - says she really hates how people use Google for symptoms, because she constantly has people coming in worried about als when 30 years ago most people considered twitching just an irritating thing that they never gave a second thought to. Also, i heard there was once a forum where anxiety sufferers all thought they had als, and it turned out none of them did! Your anxiety is trying to play tricks on you,, don't give in to it.

 

[matisworried]

Thanks so much for all the info! I thought I was doing better and feel asleep normally last night, but woke up at 5:30 in a panic. My mind immediately started racing and felt hyperactive, a feeling of weakness started in my head and flowed to my toes, it feels like someone is standing on my chest. And the twitching is back. I’ve never had it wake me up before. I need to get passed this, I feel like I’m at rock bottom.

sounds like a pretty nasty panic attack to me. sorry you experience those as well. have you or are you in any sort of therapy? learning CBT techniques work wonders for people with our particular affliction.

please try to remember that you are absolutely fine. you do not have ALS. the fact that you can do things like play basketball proves that just as thoroughly as a blood test, ct scan or mri could.

 

[Loki83]

I have an appointment with a behavioral therapist Friday. This is the first time I’ve had the extreme panic attacks. I was on Lexapro three years ago but had some side effects I couldn’t tolerate. I was numb to everything and detached from the world, the obsessive anxiety was better but my family life suffered. I would be extremely tired and head bob as I was playing dolls with my daughter. I was like a zombie walking around the house, I look back at pictures and you can see the detachment in my eyes. Really hoping the behavioral therapy works. I need to eat something but my stomach has been in constant churn mode for the last 24 hours.

 

[matisworried]

the last med i tried was celexa and at a dose that was beneficial for my depression and anxiety, i was experiencing exactly what you were. it was so unpleasant that i opted to roll the dice with anxiety. the anxiety came back which was a completely different kind of hell... then i listened to a few podcasts that were beneficial and got in to therapy. it's helped me (anxiety-wise, at least) more than any medication ever has. this isn't meant to discourage people from taking meds because they definitely CAN be beneficial, it just wasn't for me.

 

[Loki83]

Same for me. If it makes sense like I know I need to calm down and relax and the symptoms will go away but I can’t cause the symptoms won’t go away. Like my anxiety is giving me anxiety!

 

[matisworried]

crazy how that works, right?

BUT IT WILL GET BETTER!

(it just takes time and effort!)

 

[Loki83]

So I’ve managed to calm myself down enough to make it through the work day and feeling OK. Even think I can be OK till my Friday appointment. There is one last feeling I can’t wrap my head around though. It’s like a tightness in my head and I know that uncontrolled laughter and crying is an ALS symptom. So obviously I’ve become so hyper aware that I try to hold laughs in and my brain just feels weird like I laughed reading something at work as I was in a daze scrolling and I didn’t normally think it would be that funny? Like I feel the laugh in my brain but I automatically hold it in not wanting to have uncontrollable laughter. Such a weird feeling haha. And my mind started racing. Certainly this is just my anxiety jumping back in!?

 

[Bobnnat]

Yup. You’ve jumped into this fear head first. That’s your active, racing and anxious mind being totally immersed in this fear.