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Author Topic: Help! Worried, conflicting information about ALS and twitching!  (Read 329 times)

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Offline Pyr

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Help! Worried, conflicting information about ALS and twitching!
« on: January 27, 2014, 06:47:05 AM »
Help.  My ALS fears are rampant.  I have been twitching a lot.  I always thought you had to have weakness and atrophy before fasciculations but now I saw this from another health board from a doctor posted in 2007.



"The weakness may come six months to one year after the onset of fasciculations ! And an improvement is very rare in ALS.

It is true that an extensive area of the spinal cord has to be compressed to get fasciculations. But, changing severity of symptoms with changing position of the neck does point towards a more probable cervical problem.
In this case, you may consider a second opinion"

Help!   
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Offline Dmcrae22

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #1 on: January 27, 2014, 02:27:43 PM »
It's common that with health anxiety that you are willing to overlook pages and pages of reassuring information and latch onto the one small bit of negative information. The fact that you found a posting from a doctor in 2007 tells me that you were digging pretty deep to stumble upon that. I'm basing that on my personal experience with ALS fears nearly a year ago. The good thing about the internet is that you can find anything you search for. The bad thing about the internet is that you can find anything you search for.

The vast majority of muscle twitching is due to anxiety, stress and maybe a little too much caffeine. It's a very common symptom for folks on this board and I've yet to read anyone come back and say "hey, that muscle twitching turned to actually be ALS." Nonetheless it's a very scary physical symptom and when you add a little Google search, it can cause panic attacks in and of itself. As my doctor told me, we can't simply cut anxiety off like turning off the ignition of a car. It takes time. The hardest part is not thinking of one of the scariest neurological diseases out there every time you feel a twitch. But if you can start focusing back on the other things in your life, take on some projects or something, I found that helped me. Almost exactly a year ago I was twitching like crazy - fingers jumping, toes twitching, calfs, thighs, back muscles, etc.... It took some time to calm down and I see a therapist now to help with anxiety but I am not experiencing any weakness or anything. Hope this helps.
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Offline Hypo84

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #2 on: January 27, 2014, 03:16:46 PM »
Stop googling, you don't have ALS.
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Offline Dayvid

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #3 on: January 27, 2014, 05:02:16 PM »
I've been twitching recently.. though calmed down a lot now.

I didn't worry about ALS - Because you KNOW if you have this. I worried a bit about MS but again... it's not random twitches all over the body.

You know if somethings wrong - Twitching is an anxiety symptom.
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Offline Scaredofsymptoms

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #4 on: January 28, 2014, 01:03:20 AM »
Twitching only happens when the muscle is dying. You wouldn't be able to move or arm or leg well by the time it started. It is not how the disease presents itself.
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Offline livelaughlove

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #5 on: January 28, 2014, 06:01:19 AM »
STOP GOOGLING... i work in healthcare and I notice unless if it's a scholarly article, all the bad stuff which is rare is blasted on these websites and misconstrues the truth so unless you are a doctor then don't google. ALS- you would be having foot drops and just total dropping to the floor before the twitching starts, and it;s not just twitching, it is also spasming. MS- same thing, like if you closed your eyes and put your arms out you would fall right over. Or you would completely go blind for maybe a week and then regain vision. Your handwriting would become progressively worse. I have close family with MS and if they closed their eyes and do a balance test, bam, flat on the floor they would go. ALS is extremely rare and same thing, it would be total loss of limb and falling down.
I also have twitching and it is just considered benign fasciculation syndrome... it's muscle twitching with no pathological cause. It is getting less and less. It is not a spasm it is just an uncontrollable roaming twitch. Personally, I think it is a side effect of zoloft, which i take 50 mg for about 12 years now. I don't get it in the typical anxiety sufferer spots like the legs, for me the twitching occurs around the right side of my mouth, my left bicep, and down along my spine. WHen it was really bad it was everywhere, but now that seems to be the only spots. Prob just have a little irritation to the nerves in that area or something but it is nothing that is gonna kill me or harm me or make me lose feeling or anything. I think it is the zoloft, i really do. I think it makes the neurons consistently fire off or something. I think all people on SSRIs will eventually get twitching at some point, seems extremely common.
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Offline japheree

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #6 on: January 28, 2014, 06:04:17 AM »
Yes, I have to agree. STOP GOOGLING! It does no good. You need to give away the responsibility of worrying about your health to a medical professional and understand that you can never get comfort from google. Even if you see something reassuring you will inevitably risk finding all sorts of other issues.
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Offline ColdHands

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #7 on: January 28, 2014, 10:33:39 AM »
Live, Laugh, Love is right!

This is one disease that when you have it, you know it. ..
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"There is just one more thing that bothers me."  Columbo

Offline Pyr

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #8 on: January 28, 2014, 12:19:48 PM »
Thank you all for your posts. 

Its been 6 months of agony, beginning with pressure headaches like my head was a balloon heralded by earaches and jaw aches, rushes of adrenaline from my chest to head while I was sleeping, and now 8 week straight of back of head headaches burning neck and traps that runs down my back.  Ive been hospitalized twice, had 3 brain MRI's, neck MRI (which does show lots of neck issues), lumbar puncture, etc.   I even paid for a full body cat scan for myself, thats how terrible I feel.   Along the way, every time a diagnosis does not return, I search for a new disease.  And they have all been big and terrible and fatal.  I am neglecting my family and kids.  My four year old came to me and said "Mommy, we can buy you mommy calm down cream that I saw on tv"  HOw sad is that.  But i am in real pain and no one can figure out why! I don't sleep, I don't eat, I only research

SO the neuro says to me today after the exam that he saw no signs of ALS.  Of course I should have been thrilled but was unhappy that he did not want to give me an EMG to confirm.  He was a little pompous and fed up with me (I have been seeing him since this all began and I think now he thinks cuckoo bird).  So now I feel like he didn't really take my complaints seriously!  Then I said, "well maybe its too early to diagnose" and he said - "I dont think so.."  LIke he wanted to kick me out.  Here is where I struggle- do I believe him?  Any rational person would have been doing cartwheels to get that professional opinion like that!  He's not the most personable, but he is very very thorough and well respected so .... do I get over this?

Hey, interesting comment about the SSRI.  My twitches started a week after starting a benzo.  Wondering if connected.  I thought they were supposed to suppress that stuff, but maybe not....
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Offline livelaughlove

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #9 on: January 28, 2014, 06:13:49 PM »
Very very common with benzos. Benzos are bad. I would not recommend them to anyone.
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Offline livelaughlove

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #10 on: January 28, 2014, 06:39:04 PM »
All your trouble is from tense muscles in the neck and prob clenching your teeth/TMJ. Maybe misalignment like your bite may be off. To fix all your problems, you need to be proactive and do isometrics and stretching exercises. Also buy a night guard from your pharmacy and see if that improves the jaw pain. You also need to accept the health anxiety so you can move on and figure out ways to allow the thoughts to happen, accept them and then move on. Describe a typical day of yours. When do u wake? What and when do u eat? When do you go to bed? Do you sleep soundly? What meds do you take? How is your digestive system? How old are uou?  Are you on the computer a lot? How is your eyesight, do you strain, is your computer workspace set up appropriately? Are you overweight? So everything can be corrected ... I don't think doctors really tell people what to do to feel better. All they seem to do is be there to rule out serious issues like cancer or heart disease, so for the people in the irritable bowel, GERD, migraine, interstitial cystitis, fibromyalgia they get no help other than being prescribed meds to mask symptoms without getting to root cause and are shushed off on their way feeling frustrated, mad, and distrusting of their physicians. The answer to fix everything is stress reduction even if you don't feel stressed mentally. Physically your body is like woa, my autonomic nervous system is one hot mess so you need to fix it. Fix it with stress reduction and coping techniques
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Offline Gomubukai

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #11 on: January 28, 2014, 10:22:40 PM »
Stop googling.

Also if you MUST (ie you really arent able to stop yourself) google please DON'T post the results of what you've found on here.

I don't think you realise the unnecessary fear you could cause people who also have the same fear but are able to resist google.

The quote you posted by some supposed 'doctor' could give people months of the same fear you're trying to eradicate in yourself. So please be careful with what you post.

You don't have it.
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Offline Pyr

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #12 on: January 29, 2014, 01:17:59 PM »
Very good point, G.  I should have been more sensitive to that.  Thanks.
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Offline Ineedtosmile

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Re: Help! Worried, conflicting information about ALS and twitching!
« Reply #13 on: January 29, 2014, 05:27:58 PM »
its not ALS, i came through als fears not long ago. And as written above, if you have ALS, you just know, since its not possible function normally when you do
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Surprise ! ocd sucks.

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