Did anyone have Fasciculations before Atrophy?

[robc]

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]

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]

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]

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.

[jimercat]

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 dx!:?

[Lou]

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]

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

[Blizna]

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]

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]

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]

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]

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

[guwainengle]

Stress will definately exaserbate muscle fasciculations in general. In general-- aniety and stress can cause alot of symptoms.

G


http://www.anxietycentre.com/anxiety-symptoms.shtml

[Kewanee]

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]

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.

[robc]

ok.. So here's a follow-up question for those that had twitches before atrophy.

How many had emgs without fibrilation potentials at the onset of fasciculations?
How long between visible fasciculations and ENG with fibrilation potentials?

Thanks !

-Rob

[guwainengle]

Rob-

I can say I had at least 3 months of fasciculations with a normal EMG coming back after a very thorough exam. It has been a few months after that test and my cramping and twitching has gotton worse and am awaiting another in3 weeks to have a follow-up EMG. I have no atrophy that my wife sees but I can tell a difference in my left side-- arm and leg. And have no diagnosis other than BFS. I have a very good friend who had fasciculations for at least 16 months with 6 different EMG's in Pittsburghand Altoona at a very respected Neuro-science hospital-- After all the false hope during that time of twitching and sleepless nights on his 7th EMG they found abnormalities- even though he had no atrophy. When he returend for discussion there was a nurse the Neuro and a social worker there-- He knew he had bad news that day. Alot has to be said about who does the EMG and how many sticks and are they in the correct muscle. Also this friend even said over the time they were doing the sticks during a fasciculation in that muscle and nothing till the 7th one made it abnormal. It was definate positive sharp wave fibrulations. Interesting enough-- he said that the sound on the EMG machine did not make the clacking/popping noise duing the exam. If it did he did not notice it. I am curious to see how others answer this great question.

G

[megs]

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:

My Dad .[the very handsome man to your left :wink: ] Started off with the muscle twitching in the upper arms .......he had no weakness for probably the first 5 months of the disease , just twitching ..........then he developed the frontal lobe demtia as soon as the weakness arrived .........From experience do you know how many people develop the Frontal Lobe Dementia in conjunction with ALS ? ...........My Dads neurologist said the 2 were connected , but hadn't seen many cases .....talk about a double whammy :(

[guwainengle]

Megs--

I wish I looked that good at 43. Sorry to hear about the double-wammy. To answer your question on FTD. I have seen on other posts that there is a corolation between these two diseases. It seems to not be coincidental. May I ask about the type of twitching? Was it fasciculations of the muscle- or arm jerking and twitching. Did it seem continuous or sporatic. And random or isolated? Also what was the first noticable weakness that he observed? And was there atrophy present? I know alot of questions... But I am sure others may want to know also--

Thanks G

[megs]

Megs--

I wish I looked that good at 43. Sorry to hear about the double-wammy. To answer your question on FTD. I have seen on other posts that there is a corolation between these two diseases. It seems to not be coincidental. May I ask about the type of twitching? Was it fasciculations of the muscle- or arm jerking and twitching. Did it seem continuous or sporatic. And random or isolated? Also what was the first noticable weakness that he observed? And was there atrophy present? I know alot of questions... But I am sure others may want to know also--

Thanks G

Hi Guwainengle

That pic was taken just before diagnosis when he was 63 , he was a super fit man who was very fastidious about having good health ....

It started with fasciculations of the muscle............it was continuous ..........started in his upper arms , then his stomach ..............The first noticible weakness came in his hands , He used to play A grade tennis every Saturday , he could no longer hold the Raquet with a firm grip

The Atrophy came after the weakness started in his hands .........fasiculations -----> hand weakness----------> atrophy of upper limbs ----------> Dementia ----------> loss of weight

He died with his breathing still over 70%.............

[linken]

My ex had ALS and I have sympthomes too, but not any diagnosis yet. I think we got it from pesticides.

[Saubier]

I have had hardly any fasciculations, and what I have had haven't bothered me much, but I do have significant atrophy in my hands.

[APC]

I just came upon this post. My husband started with the fasics in the upper arms. % mos later we noticed speech changes. Then the weakness started in the legs and arms. Dx PLS going to ALS eventually. So the dr. thinks. It was a year in the maiking for the dx. We still believe in the power of prayer. I pray daily for him. He's always been a very handy man around the house. Now he's unable to do the things he loves.

[Tall John]

I discuss my onset elsewhere

[4rhl1981]

It pretty funny that most diseases cause anxiety, and anxiety cause every symptom out there! I'm starting to think anxiety is a blow off line, every time I go to the VA no matter what it is for its anxiety. Trouble swallowing= anxiety, muscle twitches = anxiety, chest pain= anxiety, GRFD = anxiety, acne = anxiety, back pain= anxiety. I am surprised when I was bleeding internal, from being injured in Iraq they didn't say that was anxiety too, but they did say I had PTSD which is a type of anxiety, ha ha. Sorry just venting. This is by no mean directed toward anyone it just my frustration with the VA coming out. Sorry again.

[dona jean]

i have been having fasciculations in my arms for quite some time. before i was diagnosed with als in october 07 i was having them in my legs and tourso as well.
i still have fasciculations all over my body, and my legs are progressively getting weaker, as well as my arms and hands. the doc says the fasciculations will never go away, so i just live with them...just like the disease...it is what it is. hang in there and
do like the rest of us and go day by day and be thankful for what we have! peace.