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  #11  
Old 12-01-14, 18:04
scared_ter scared_ter is offline
 
Join Date: Jan 2014
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Re: Hi, new here, at my wits end with als fear....

Quote:
Originally Posted by Andrash View Post
As a man with a HA problem who just managed to overcome his ALS fear, let me help you.

So, you are afraid you'll be joining the luminaries of sports and science like Lou Gehrig, Stephen Hawking or Fernando Ricksen? Don't be. The thing with ALS is: it is devilishly hard to diagnose it (because its symptoms are common with soooo many other illnesses and it mostly doesn't show on scans) but, luckily for everyone with HA, it's fairly easy to determine when you don't have it. In your case, it's clearly so.

Firstly your symptoms. Muscle twitching in legs, eye twitching, mild nausea, dizziness, tingling. ALS start in one limb, or in your mouth. It can't start in both legs, or both legs and an arm. Secondly, when you have ALS, it's the other way around-FIRST atrophy and weakness, THAN twitching. Thirdly eye muscles are either not affected by the disease at all, or are the LAST muscles ALS affects-that's why people like Hawking, who would otherwise be locked-in from ALS, communicate with blinking-their eye muscles are ok. Last, but not the least-ALS is a MOTOR neuron disease, not sensory. That means people do not experience pains, numbness, tingling and other strange sensations, and that's why it's so insidious and dreaded. Therefore, the things you feel-definitely not from ALS.

This should be enough to persuade you you don't have it, but if it's not-here some self-tests that you can make to rule it out:

-Staying on one leg: stay on one leg for 3-5 seconds. If you can do it, you don't have ALS. I know, you can panic and shake and fall and that can create more panic-that doesn't matter, since it's enough to make it once in 100 attempts and you still don't have ALS. People with ALS can never make it-they are never able to balance.
-Jump at the stair with both feet. If you can do it, you don't have ALS.
-Catch something moderately heavy-for example, a pint of milk, with only your thumb and index finger. If you're able to lift it, even for one single second, you don't have ALS.

If you're worried about bulbar (mouth) onset of ALS, try these:

-Whistling-if you can whistle, whether by sucking air or blowing it, you don't have ALS.
-Breathing through pursed lips-if you can do it, you don't have ALS.

Of course, even if you "fail" some of these things, it can (and odds are it is, since your odds to get ALS are something like 1:10000000) be something else, anxiety being the main culprit.

So, your troubles are not the symptoms of ALS. Alas, they are symptoms of the health anxiety disorder. It IS a disease, just like ALS-only not that deadly, luckily. But still, it should be treated. Therefore, try to calm down, read this carefully, if necessary do this little exercise to put your mind at ease-than start treating what really is a problem-HA.
Thank you very much for such a thoughtful reply, it has helped.
Can I ask you about the milk thumb index finger thing? Is that really true?
If those tests are all true it does help me a lot.
Thank you.

---------- Post added at 18:04 ---------- Previous post was at 15:53 ----------

Really hoping the medication works quickly.
Never been so worn out as I am today.
This is as low as I have felt
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  #12  
Old 12-01-14, 18:14
Andrash Andrash is offline
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Re: Hi, new here, at my wits end with als fear....

Quote:
Originally Posted by scared_ter View Post
Thank you very much for such a thoughtful reply, it has helped.
Can I ask you about the milk thumb index finger thing? Is that really true?
If those tests are all true it does help me a lot.
Thank you.

---------- Post added at 18:04 ---------- Previous post was at 15:53 ----------

Really hoping the medication works quickly.
Never been so worn out as I am today.
This is as low as I have felt
All these tests are done to rule out not just ALS, but a whole lot of muscular and neuromuscular disorders (most of them mild, some, like ALS, severe). Basically, if you can do any of these, you don't have ALS Therefore, if you "failed" something put it to anxiety and consequent lack of concentration or strength (anxiety can also cause weakness, you know, and that's called "perceived weakness" as opposed to real weakness caused by, for example, ALS).

It's a nasty disease-it starts by prosaic things you sometimes don't even notice,for example, you can't whistle any more, or you can't pronounce your S's, or you can't unlock the door or hold the pint of beer in your hand, and then, it progresses...I went to the ALS forum while I was fearing it (some sort of online exposure therapy )-these people (sufferers gathered there) should really be an inspiration to us all-they accept their fate in such a calm, dignified, even humorous way, and try to help each other, even if some of them are on the brink of death or can not eat, breathe, change their clothes or go to the toilet alone. There were people whose eye-controlled computer broke and were locked in for week or month until they got it fixed -than they came back to the forum and laughed about it. Your heart really breaks and goes out to them when you see what they're going through :(

Luckily, it's rare...Therefore, don't panic, especially if you are a young person-chances to get ALS are something about one in ten million. However, 40% of all people suffer from some sort of anxiety. So you calculate the probabilities

I learned this all during my own battle with ALS fears-so I am not trying to lecture, I were in the exact place you're now.

Last edited by Andrash; 12-01-14 at 18:26.
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  #13  
Old 12-01-14, 18:20
scared_ter scared_ter is offline
 
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Posts: 44
Re: Hi, new here, at my wits end with als fear....

Quote:
Originally Posted by Andrash View Post
All these tests are done to rule out not just ALS, but a whole lot of muscular and neuromuscular disorders (most of them mild, some, like ALS, severe). Basically, if you can do any of these, you don't have ALS Therefore, if you "failed" something put it to anxiety and consequent lack of concentration or strength (anxiety can also cause weakness, you know, and that's called "perceived weakness" as opposed to real weakness caused by, for example, ALS).

Therefore, don't panic, especially if you are a young person-chances to get ALS are something about one in ten million. However, 40% of all people suffer from some sort of anxiety. So you calculate the probabilities

I learned this all during my own battle with ALS fears-so I am not trying to lecture, I were in the exact place you're now.
Thanks again, I can do those tests, its just that they seem so straightforward.
I'm 35 also.
Are they what the medical profession would use?
I googled a few others but they require assistance.
Doing pushups seems so stupid but that's what I've tried.
The twitch this morning really got me.
I'm just in a bit of a bad place and really hoping to get out.
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  #14  
Old 12-01-14, 18:30
Andrash Andrash is offline
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Re: Hi, new here, at my wits end with als fear....

Quote:
Originally Posted by scared_ter View Post
Thanks again, I can do those tests, its just that they seem so straightforward.
I'm 35 also.
Are they what the medical profession would use?
I googled a few others but they require assistance.
Doing pushups seems so stupid but that's what I've tried.
The twitch this morning really got me.
I'm just in a bit of a bad place and really hoping to get out.
As I wrote when I edited posts-that's how you start to notice ALS, inability to do these small, straightforward things is a first symptom, NOT twitching or tingling If you have ALS onset in, let's say, right hand: first you can't do these small things, then you can't do pretty much anything with it as your muscle atrophies, THAN you experience twitches-NOT the other way around. When you start twitching, but you can do everything with it (even if you sometimes THINK you can't)-that's perceived weakness induced by your psyche, not real weakness caused by motor neuron disease.

Therefore, no worries
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  #15  
Old 12-01-14, 18:36
Fishmanpa Fishmanpa is offline
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Re: Hi, new here, at my wits end with als fear....

Hi Scared....

Andrash has given you some excellent advice from experience. The chance that this is sinister is well.... none really.

There was another thread about this not too long ago. ALS is one of the hot button fears of HA sufferers. I know it's real to you as it is to others but think for a moment...

Many of these other sufferers in the thread were so scared of this that they would literally hop around the house and jump up and down stairs (even in other peoples homes!) to test if they were suffering symptoms! Picture in your mind for a moment what that looks like and even more so what someone seeing you doing that would think

I had a twitch in my thumb muscle for about two weeks. I was stressing about some things so I attributed it to that. The issues were resolved and the twitching went away... no worries My fiance' has been under stress at work. After 4 days of stress at work she would come home and have twitches in her eye and her stomach was hurting due to acid. Again... stress... The twitches stopped a day later

Positive thoughts
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The best help is the help you give yourself! http://cbt4panic.org/
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  #16  
Old 12-01-14, 18:43
Andrash Andrash is offline
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Re: Hi, new here, at my wits end with als fear....

Quote:
Originally Posted by Fishmanpa View Post
Hi Scared....

Andrash has given you some excellent advice from experience. The chance that this is sinister is well.... none really.

There was another thread about this not too long ago. ALS is one of the hot button fears of HA sufferers. I know it's real to you as it is to others but think for a moment...

Many of these other sufferers in the thread were so scared of this that they would literally hop around the house and jump up and down stairs (even in other peoples homes!) to test if they were suffering symptoms! Picture in your mind for a moment what that looks like and even more so what someone seeing you doing that would think

I had a twitch in my thumb muscle for about two weeks. I was stressing about some things so I attributed it to that. The issues were resolved and the twitching went away... no worries My fiance' has been under stress at work. After 4 days of stress at work she would come home and have twitches in her eye and her stomach was hurting due to acid. Again... stress... The twitches stopped a day later

Positive thoughts
Thanks

ALS is the nice example of how Dr Google can drive us all crazy. You google "ALS symptoms" and there is a list: weakness, twitching, difficulty swallowing, difficulty speaking and so on. Jet the simple time sequence is nowhere to be found, of course-no one tells you that, for example, your hand is totally disabled by the time twitching starts-so you dwell about your "symptoms" a bit, then some of your muscles twitch once, twice-there you go, Houston we have a problem
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  #17  
Old 12-01-14, 18:51
scared_ter scared_ter is offline
 
Join Date: Jan 2014
Posts: 44
Re: Hi, new here, at my wits end with als fear....

Thanks again, your words have helped me today.
If I could ask for one thing in the world it would be to hot have these fears.
Would not wish HA on anyone.
Its horrific.

---------- Post added at 18:51 ---------- Previous post was at 18:48 ----------

Quote:
Originally Posted by Fishmanpa View Post
Hi Scared....

Andrash has given you some excellent advice from experience. The chance that this is sinister is well.... none really.

There was another thread about this not too long ago. ALS is one of the hot button fears of HA sufferers. I know it's real to you as it is to others but think for a moment...

Many of these other sufferers in the thread were so scared of this that they would literally hop around the house and jump up and down stairs (even in other peoples homes!) to test if they were suffering symptoms! Picture in your mind for a moment what that looks like and even more so what someone seeing you doing that would think

I had a twitch in my thumb muscle for about two weeks. I was stressing about some things so I attributed it to that. The issues were resolved and the twitching went away... no worries My fiance' has been under stress at work. After 4 days of stress at work she would come home and have twitches in her eye and her stomach was hurting due to acid. Again... stress... The twitches stopped a day later

Positive thoughts
Thank you too, trying very hard to let the advice take hold
I do not want to be this unhappy.
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  #18  
Old 12-01-14, 22:06
pepsi pepsi is offline
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Re: Hi, new here, at my wits end with als fear....

I had servere twitching 2 months ago that lasted as long arms back calves stomach scalp eye lids i got myself in a right anxious state the more i worried the worse it got . I am not sure why the twitching started i still have it but not so bad i fretted about als day and night it took over my life googling all the time ...reading that post above even now gives me reassurance altglhough my twitches ping alot im otherwise fine. Anxiety caused it im sure of it and im sure its the same for you
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  #19  
Old 12-01-14, 23:30
JITTERBUG1 JITTERBUG1 is offline
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Re: Hi, new here, at my wits end with als fear....

You might try seeing a chiropractor. With your back and hip pain, you might be out of alignment and your muscles might be compensating. Also a nice warm bath or massage might help. I have had twitches that have lasted for 2 months, they are usually facial, but they didn't seem to disappear until I learned to ignore them. Don't worry you are definitely not alone.
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  #20  
Old 13-01-14, 03:41
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RoseEve RoseEve is offline
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Re: Hi, new here, at my wits end with als fear....

Hi there it was my post recently about ALS fishmanpa is referring too. My twitching had stopped. Twitching muscles is very very common in anxiety suffers. I agree that ALS is a hotbutton fear among those of us with HA.
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