Did anyone have Fasciculations before Atrophy?

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robc

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I'm wondering how many people with an ALS diagnosis had fasciculations before atrophy. I'm in the PLS/Possible ALS stage with clear upper motor neuron involvement & some lower motor neuron involvement seen in a biopsy.

I have widespread fasciculations that have developed & progressed in the last few months but not any clear signs of atrophy.

From reading the literature it seems more common for fasciculations to follow atrophy. Wondering how many people had the opposite experience?

Thanks!

-Rob
 

ltr

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Rob, I have had fasciculations before atrophy. My PT's have been measuring my legs and arms/hands and have documented atrophy, not too bad, but it started with twitching. I believe some PALS, such as quadbliss began with twitching as well. As you know, my diagnosis is myopathy and fasciculations are not usually a symptom of it, so the neuro is perplexed, as am I!
 

joelc

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I had fasciculations well in advance of atrophy. From the reading I have done this seems to be the norm.
Has anyone here had a different experience?
 

ltr

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All the literature I have read, and according to Rob, he has read too, says the twitching comes after the atrophy. That is what many of the PALS have told us too. Do you happen to remember where you found that the twitching comes first? It would probably be bothersome to many of us, but something I would like to show my neuro. Thanks.

See how many faces of ALS.....it's just so unpredictable.
 

brooksea

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My husband had/has fasciculations before atrophy. The way it was explained to us is the fasciculations are caused by the nerves mis- communicating with the muscle, which breaks the muscle down (atrophies). This in turn causes weakness, as there is less muscle to provide strength. I also believe this is the norm as joel stated.

By the way, it could take a while for atrophy to show up.

Leslie- wish you could find diagnosed!:?
 

Lou

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My husband had fasciculations before athrophy. He started with a terrible cramp in his arm then his leg and then months later he had the fasciculations and I knew what he had. I was a nurse but I had never seen symptoms like his but I just knew it was ALS. About 6 months later he was diagnosed through an EMG. He had fascicuations in his left arm and his back chest wall.
Has anyone ever heard of a husband and a wife having ALS at the same time? I thought it wa nearly impossible but our doctor said that he had a couple.
It scares me because I have twitches tooand weakness but I am hoping it is because I have been taking care of a very heavy man for four years. Lou
 

Al

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I had fasic's before atrophy as well.
AL.
 

Blizna

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Al, others: What? From all literature I have read fasciculations always come after weakness/atrophy. I dont understand :( Some neuros wrote on their web it has to be this way since fascics are caused by reinnerving damaged muscle.
The next explanation I read was, that the people didnt notice weakness that was already present. Possible..?
I really dont know :(

My personal question: Did any one have fascisc as a very first sign? I know its rare but I would like to know...Only twitching for months? No weakness, no motoric disorders..only twitching:
 

Al

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I had had a quad bypass heart operation in 99 and by late 2002 still hadn't regained my strength and had leg and hand cramping. Not sure if the ALS caused that or the heart but the fasic's were noticed Dec. 02.
AL.
 

Boots

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My husband suffered severe muscle cramping and the twitching also occured before his atrophy was evident to me. He still has a lot of twitching which stress and fatigue seems to be definite triggers. He is happiest when he stays busy and keeps his mind off of it. We use a vibrating pad and that seems to give him some relief.
 

Blizna

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Boots: I have never heard that ALS fascics are triggered by stress or fatique..anyone else with this experience? I thought that ALS fascics are physically caused and cant be influenced. Damn, I will never know :(
 

TerryO

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Fasics and weakness

Hello All, My husbands Als symtoms started with weakness in his right ankle and leg.
Next was his right arm weakness and then fasics started. He also agrees that fasics are more pronounced when he is very tired or has been doing too much at one time. Terry
 

Kewanee

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Lou said:
My husband had fasciculations before athrophy. He started with a terrible cramp in his arm then his leg and then months later he had the fasciculations and I knew what he had. I was a nurse but I had never seen symptoms like his but I just knew it was ALS. About 6 months later he was diagnosed through an EMG. He had fascicuations in his left arm and his back chest wall.
Has anyone ever heard of a husband and a wife having ALS at the same time? I thought it wa nearly impossible but our doctor said that he had a couple.
It scares me because I have twitches tooand weakness but I am hoping it is because I have been taking care of a very heavy man for four years. Lou


In researching just today I found a mention of both husband and wife having ALS and some other close associates mentioned as well. Like football players and a group in Guam. Don't know why. I was on Answer.com and searched Amyotrophic Lateral Sclerosis.

Many neuro. diseases as well as some metabolic illnesses can cause twitches.

Kewanee
 

Jeliota

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Just as an FYI. Twitching always comes before atrophy in ALS. The only question is whether you notice it or not. Generally speaking, people who present with fasciculations first present with focal as opposed to generalized fasciculations, although the fasciculations can spread rather quickly.


As for the post on stress and ALS twitches, even people with ALS can have benign fasciculations. As a matter of fact, given the stress created by the disease, I'd say it's probably pretty common.
 
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