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Author Topic: Newbie and dealing with fear of ALS  (Read 258 times)

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Offline coachdalton

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Newbie and dealing with fear of ALS
« on: June 29, 2014, 01:59:36 PM »
About two months ago I had a health scare because some blood work which ended up OK. However, I had some severe anxiety that kept out out of the gym ( my only vice) I finally went back and my arms had no stamina and shook. I've had twitching all over and tendonitis  for over 4 years which was attributed to overuse of cipro and really didn't think much of it. Had a lower EMG 3 years ago for back problems everything was fine so now its 3 days later I'm still real sore. So now I'm thinking this actually might be ALS .....I was able to curl 50 lbs 15 times and can do 25 good pushups but I don't know what caused the shakiness....I'm recall scared I'd rather die than suffer like this!
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Offline albert

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Re: Newbie and dealing with fear of ALS
« Reply #1 on: July 01, 2014, 09:00:56 AM »
Hello,  I'm sorry to hear you are having a hard time.  A few years ago I worried about ALS, for me it actually started with the twitching all over my body.  I can guarantee that twitching in ALS only happens when your muscles are atrophied.  This means that you pretty much don't have any use of your muscles, which is not the case here.  The weakness you said you noticed, is it something you feel?  If it is let me tell you that I had the same issue with my legs first, I felt the weakness in my legs and they were shaky when I would even walk.  I felt that my legs where jelly...lol  But with ALS you don't feel weakness, it just happens.  You probably can't curl the same weight because you said you stopped going to the gym.  Same thing with me, I actually stopped going for about 4-5 weeks and let me tell you I felt the difference.  I couldn't lift as much as I could and this aggravated my anxiety.  Go see your doctor and tell him your concerns, I did that myself and It took me a while to get over my fear, but eventually I did.  And so will you...keep me posted on how you feel, If you have any questions about how you feel let me know.  I had the fear of ALS for a while and learned quite a bit about how anxiety can mimic this horrible disease.  Keep me posted!!!
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Offline renschwartz

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Re: Newbie and dealing with fear of ALS
« Reply #2 on: July 01, 2014, 10:42:50 AM »
Coachdalton,

Thank you for your response to albert -- I sometimes wonder about the "weakness" I feel it my legs and I am always told it is not "clinical weakness" (because I would fall down) but just a weakness that I perceive or feel.  The way you put it is helpful and makes sense. 

Also, albert, I had a baby in March and have recently started exercising again. I figured with carrying around the baby for months my arms would be strong as hell -- but as soon as I lift something like a weight (or even a milk jug across the table) or do situps or squats, my muscles shake, sometimes very badly.  I have been told it is a combination of anxiety plus the fact that muscles have gotten weaker in the past year. 
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Offline albert

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Re: Newbie and dealing with fear of ALS
« Reply #3 on: July 01, 2014, 10:55:20 AM »
congratulations!!! However that still happens to me to this day, I carry my baby girl and after my arms feel super shaky.  This also happens when I workout, right after my workout I lean on something and people stare at me because my whole arm will shake...lol again if you feel weakness is different than having weakness, who told you your muscles have gotten weaker in the past year?  Do you exercise regularly?
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Offline renschwartz

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Re: Newbie and dealing with fear of ALS
« Reply #4 on: July 01, 2014, 11:13:15 AM »
You lose muscle tone when you are pregnant (per the doctor), its a natural occurance -- just like not going to the gym for a few weeks or a month you will lose some tone.    She said that lots of moms get RSI's from the lifting and carrying around baby after they give birth.  Obviously your core muscles are very weak as well following a pregnancy, and you tend to overuse your back too (which I think is part of my problem as well).    I asked my doctor why my low back shakes when I bend over and she wasn't even remotely concerned, she was just like stress and tired muscles.  My arms shake all the time after carrying around my kid too (he is currently up to 16 pounds)-- and then I worry when I grab my phone to text or something and I am all shaky and twitchy, and then I have to remind myself that carrying around 16 pounds even for 5 minutes would be considered a workout if I were at a gym or something. 
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Offline Expertgamer

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Re: Newbie and dealing with fear of ALS
« Reply #5 on: July 01, 2014, 02:09:09 PM »
ALS always begins with clinical weakness. Many people believe it starts with atrophied muscles or twitchy muscles- but it doesn't. The twitching always starts after the muscle starts to 'rot away'.
It's not just any weakness that shows up either- it starts with small things, like not being able to hold up a cup of coffee or turning your keys into your door. You will notice you're getting clumsy or not being able to walk properly. If you had ALS you couldn't have done the things you did in the gym. 

Twitching muscles are not something to be concerned of- twitching muscles because of them being irritated or twitching because of ALS are two different types of twitching. ALS twitches are far less noticable and ALS patients often don't feel them.

I've had twitches all over my body for like 12 years now! I had major ALS scares a few years ago but gradually it went away on its own (because I stopped paying attention to it) and now it doesn't bother me anymore.
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Offline thenomnomnomicon

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Re: Newbie and dealing with fear of ALS
« Reply #6 on: July 01, 2014, 02:39:46 PM »
About two months ago I had a health scare because some blood work which ended up OK. However, I had some severe anxiety that kept out out of the gym ( my only vice) I finally went back and my arms had no stamina and shook. I've had twitching all over and tendonitis  for over 4 years which was attributed to overuse of cipro and really didn't think much of it. Had a lower EMG 3 years ago for back problems everything was fine so now its 3 days later I'm still real sore. So now I'm thinking this actually might be ALS .....I was able to curl 50 lbs 15 times and can do 25 good pushups but I don't know what caused the shakiness....I'm recall scared I'd rather die than suffer like this!

Nothing you've said sounds like ALS. If you've been twitching for 4 years you can certainly exclude ALS as being the cause. Having had a clean EMG a year after your twitching began really speaks against ALS. I'm confident you do not have it.

To the others in this thread, I do not intend to be alarming, but you can have twitching before other symptoms (although during a physical examination, often others are found such as hyperreflexia). I'm only aware of one case presenting exclusively with twitching without any other indicators and pathological changes occurred within 6 months (other unique cases exist) -- I am also not current on the details of this case as it was reported by the person affected and I do not know if she had a neurological examination or what may have been found. It is indeed a very rare presentation, but I see this misinformation a lot and I think it invalidates this website as a reputable resource -- and I believe it is important that the information shared here is accurate and not sugar-coated. It really only leads to more questions after the person does their own research (which we all know is inevitable).

OP, how old are you?

Please, though, if you are inclined to do your own research, go to AboutBFS and stay away from the ALSForums. You'll find more useful information there without the need of terrifying yourself.
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Ph'nglui mglw'nafh Cthulhu R'lyeh

Offline albert

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Re: Newbie and dealing with fear of ALS
« Reply #7 on: July 01, 2014, 03:00:36 PM »
I don't agree with you  thenomnomnomicon, I not only did my research but I've been to ALS forums with people being affected by this disease.  I have even spoken to neurologist, not to mention my own doctor, in the site who have told me that muscle twitching is not a first sign of ALS, that muscles twitch because they are dying and are at the final stages.  I'm not saying that the case you are talking about is not true, but I think it was a coincidence at the beginning or just bad luck.  I'm not trying to sugar coat anything, I'm speaking about true real events that I have lived.  But you coming in here saying these things with just one case being your whole argument is I think irresponsible for you to post in this forum.  Not sugar coat, being supportive...
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Offline thenomnomnomicon

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Re: Newbie and dealing with fear of ALS
« Reply #8 on: July 01, 2014, 03:14:05 PM »
I don't agree with you  thenomnomnomicon, I not only did my research but I've been to ALS forums with people being affected by this disease.  I have even spoken to neurologist, not to mention my own doctor, in the site who have told me that muscle twitching is not a first sign of ALS, that muscles twitch because they are dying and are at the final stages.  I'm not saying that the case you are talking about is not true, but I think it was a coincidence at the beginning or just bad luck.  I'm not trying to sugar coat anything, I'm speaking about true real events that I have lived.  But you coming in here saying these things with just one case being your whole argument is I think irresponsible for you to post in this forum.  Not sugar coat, being supportive...

It is sugar-coated, albert. There is no definitive cause for the twitching in ALS. It is speculated it has to do with the denervation/re-enervation process, but there are exceptions to this. I'm not speaking from knowledge of simply one case, but of many unusual cases. Twitching is not a reliable or even worrisome symptom, but nonetheless can present before clinical, or even subclinical, weakness. Especially in cases that are UMN-dominant. Again, usually there are other signs, but not necessarily evident to the person affected -- these typically being hyperreflexes. Cramps can precede other symptoms as well. Like I said, the occurrence of these cases is so few that they are negligible.
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Offline albert

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Re: Newbie and dealing with fear of ALS
« Reply #9 on: July 01, 2014, 03:35:20 PM »
You mention that you are only aware of one case???  So where did all these other cases come from, I'm sure there are exceptions to every rule.  It's like me saying that my tension headache could be a brain tumor.  As there are other cases recorded that have this as their only symptom, but it's not typical.  And these cases are far more consistent then ALS.  So if I would go to a forum where a person has a headache and saying that it's their only symptom, I should go and say yeah it could be a brain tumor because you have a headache.  It's completely out of line, and stupid for me to make that argument.  Like I said this is a support group, I'm telling her my personal experience and what I have learned.  If I didn't know what I was saying I wouldn't post.  I know what it was like to live through that hell for 2 years, and with people like you making these comments would of made things harder for me...Not cool!!!
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Offline albert

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Re: Newbie and dealing with fear of ALS
« Reply #10 on: July 01, 2014, 03:36:23 PM »
You mention that you are only aware of one case???  So where did all these other cases come from, I'm sure there are exceptions to every rule.  It's like me saying that my tension headache could be a brain tumor.  As there are other cases recorded that have this as their only symptom, but it's not typical.  And these cases are far more consistent then ALS.  So if I would go to a forum where a person has a headache and saying that it's their only symptom, I should go and say yeah it could be a brain tumor because you have a headache.  It's completely out of line, and stupid for me to make that argument.  Like I said this is a support group, I'm telling her my personal experience and what I have learned.  If I didn't know what I was saying I wouldn't post.  I know what it was like to live through that hell for 2 years, and with people like you making these comments would of made things harder for me...Not cool!!!
You mention that you are only aware of one case???  So where did all these other cases come from, I'm sure there are exceptions to every rule.  It's like me saying that my tension headache could be a brain tumor.  As there are other cases recorded that have this as their only symptom, but it's not typical.  And these cases are far more consistent then ALS.  So if I would go to a forum where a person has a headache and saying that it's their only symptom, I should go and say yeah it could be a brain tumor because you have a headache.  It's completely out of line, and stupid for me to make that argument.  Like I said this is a support group, I'm telling her my personal experience and what I have learned.  If I didn't know what I was saying I wouldn't post.  I know what it was like to live through that hell for 2 years, and with people like you making these comments would of made things harder for me...Not cool!!!
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Offline thenomnomnomicon

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Re: Newbie and dealing with fear of ALS
« Reply #11 on: July 01, 2014, 03:43:26 PM »
Being a 'support group' is no excuse to propagate fallible information.

I'm honestly very uninterested in debating this.

I am personally aware of one. And will not provide you the studies nor links to the others here because that is unnecessary fear-mongering. 

Twitching alone remains a VERY poor indication of illness, but listing it as an impossibility is reckless.

There's a quote somewhere about science being a study of probability, not of absolutes.
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Offline thenomnomnomicon

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Re: Newbie and dealing with fear of ALS
« Reply #12 on: July 01, 2014, 03:47:28 PM »
And do not levy your personal, 'hell' as a refutation.

We're all there. We've all been through it. I'm going through it now. There's an entire forum dedicated to this specific anxiety (AboutBFS).

Anger is a typical response to fear, however it does not change fact. 

That said, this is not an appropriate place to argue over this. PM me if you really must and I will give you those links or a place to look for them (this is only available to albert, I will not provide it to any one else and discourage seeking it out).

OP, you still don't have ALS, so don't fret.
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Ph'nglui mglw'nafh Cthulhu R'lyeh

Tags: GAD hypochondria 
 

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