Is twitching constant with ALS?

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peanut78

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:?I was just wondering if anyone knows what the twitching is like with ALS. I've been twitching for about a month, had an EMG only a week after I started and it was normal. I was just wondering if nyone knows the difference in twitching with ALS and BFS. I'm assuming that with ALS it wouldn't be in your arm one minute, your leg the next, and your back/stomach the next. Isn't it usually in one or two particular muscles that is constant until the muscle dies? Anyone have any insight? Thanks!
 

Al

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With me once it started in a muscle it went on 24/7, never stopped and gradually moved to other places. It has stopped in a few muscles and there is absolutely no mistaking the atrophy.
AL.
 

peanut78

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Thank you so much for your reply Al.
By the way, you are truly an inspirational person:)
 

whiskers

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Mine Moves Around. Baclofen Helps Tremendously
 

vmd

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Apparently, there is no systematic pattern regarding fasciculations. Like Al, I have constant fascics in my calves and they have moved to other locations (forearms, for example). Yet, before the fascics became constant, I would experience them sporadically in every part of the body you can imagine. In my case, the frequency of fascics has increased since the onset of symptoms, as well as the number of different locations. It is quite apparent to me that fascics are becoming permanent in various parts of my body.
 

Blizna

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whiskers, vmd: Guys, what does it mean "fascics move around"? That they are still here but move, or its twitch there, 5 minutes later twitch here. I have twitches about 10-15 per hour in a few places (knee, forearms, back...). I have read that benign fascics are more stable in location and they are more felt. However, im still nervous of it :(
 

vmd

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Perhaps, describing facscics as moving around is innacurate. The fascics appear in different locations and we may describe this as "moving around." I have both types of fascics, those that are constant in one location and also those that are not constant, but appear in different locations during the day. I hope I have confused you even more!
 

Blizna

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vmd: Yeah, you have just done it :) Also what about frequency? I cant understand it :/
 

vmd

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Some of my fascics come once a day or a few times a day, while others come every few seconds. So, really, there is no uniform pattern for the fascics. Blizna, without weakness, however, fascics by themselves are not diagnostic of MND.
 

childermass

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twitching constantly

Hello,

I'm new here and very scared. Basically, a year ago, I woke up with a headache and some nausea, and the headache has never gone away and likely never will. It's a rare headache disorder. Fast-forward to today, and there's one symptom from that disorder that I haven't really talked to my doctor about but will when I go up on friday. About 2-3 times a month, the world shakes around me for 10 or so minutes. As I was thinking about that last time it happened, I started to focus on my body and wonder if I had any other neurological problems. That's when I noticed that I seemed to twitch an inordinate amount. At least once every five minutes, though usually more, somewhat in my body, but usually either in my arms or legs, a muscle with twitch. That seems very excessive. Often times it's not noticeable to anyone but sometimes it causes my arm, leg, hand, or foot to move.

I have no idea how long this has been going on. I don't think I feel any weakness right now. I'm scared to death and very well realize that a rare condition can happen to me because I already have one. I was just getting my life back together as well and starting to enjoy it and now I'm terrified about having ALS. My twitches usually don't last more than a second, though one day my left quad twitched the entire day. I'm a 30 yr old male. Just wondering if my twitches seem like those associated with ALS? I know that I'm somewhat young and that just twitching is not normally associated with ALS, but like I said, I already have one rare condition, I don't see why I wouldn't have another.
 

C7ss

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constant v sporadic twitches

Your posts have been very helpful. My husband has twitches, I first noticed it in June with both calves. Along with the twitches were "movements" a rolling of the muscle that my daughter described as looking like he was about to give birth to an alien. (Like in the movies were something pops of their stomach.)

Since June his right leg has atrophied about 3/4 of an inch and he now has twitches in the calves of his feet (constant), arm, stomach, buttock (sporadic). He claims he can't feel these, except he thinks when his butt twitches that he gets a burning sensation. Obviously he can't watch his own butt twitch, so maybe this is more of a cramping.

The leg cramps have started getting worse at night, but I don't think he has muscle weakness. Although, sometimes he will say that his legs feel like he just walked up a 17 mile hill. He has dementia with this, and when that first presented (diagnosed) in 2004 he stopped driving because he had problems "making his legs do what he wanted them to". He has fallen a few times and when that happens it's like his upper body moves but his legs don't, and over he goes. I don't know if this is the dementia part or MND?

Do any of you experience the "tired" legs or inability to make your legs move? Is tired legs the same as muscle weakness? Are the "rolling" movements just strong twitches? I haven't seen his legs since it's turned cold and he's in jeans now, but the 3/4 of an inch size difference was noticed at the end of August or about 12 weeks after seeing the calves twitch. Is this considered a lot (fast) atrophy? I have no idea when we will see a doctor, should I be pressing harder to get him seen?

Thanks -
Cindy
 

brooksea

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Cindy,

You say he was diagnosed in 2004? ALS?

I would get him to an ALS Clinic so they can determine where he is in terms of progression and can offer information regarding assistive devices to prevent falls, etc...You don't want him seriously injuring himself. Have you contacted the ALSA? They can at least send someone to your home to discuss options, if you can't get to the doc right away. They have a loan closet with things to help.

The twitching or fasciculations are the nerves behaving badly. They do this until the muscle dies and is no longer usable. That is in turn atrophy of the muscle. As far as how fast your husband's muscle atrophied, you probably didn't notice it til it became drastic. No muscle - no movement. He sounds like he really needs at the least a walker to help him get around. Please let us know how you are doing in this situation!

http://alsa.org Contact them for help!
 

Midnight

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twitching and no more buttocks....

I am definitely not a doctor, but if I were only twitching I'd be so happy. I mean SO, SO HAPPY. After reading more than a human being should ever subject themselves to, I am under the impression that if you are twitching alone, I wouldn't worry about it. If you have twitching combined with other symptoms...than maybe look into it some more.

I am not diagnosed with anything, so I am actually considered (by all my perfect tests) to be a perfectly healthy person.

I have a couple different types of twitches... I have the type that move around (I think the frequency varies from one per second to one every 10 seconds or so) and these seem to be slightly stronger...like....twitch in abs, twitch in leg...break for 10 seconds or so...twitch in forearm....twitch in buttock...twitch in flank...

Then I have the twitches that stay in a particular area more consistently..usually after cramping for awhile...like hand and forearm, lower leg muscle and my stomach (like AnnMarie and I say it feels like you are pregnant and the baby is kicking). But these more constant twitches are not necessarily as strong, but more like a heartbeat or flutter at times. Sometimes I see them in my forearm and they are obviously in different muscles because they travel within the same basic area, but like you said...they look like an alien is in your body.

Plus...all the sudden I have noticed that I have no more muscle on my bottom. Sounds kind of silly, I know, but I think I twitched my muscle away or something because I sit down..even in my computer chair and I feel like I am sitting on my bones! It brings new meaning to loosing your a** :)

So...I don't think there are any clear cut answers. It seems like it is more a collection of twitches and other symptoms. I wish I knew!
 

C7ss

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diagnosed/butt twitch

jimercat and Midnight

He was diagnosed with frontal lobe dementia (behavioral dysexecutive syndrome) November 2004 at Mayo Clinic. About a year later I started hearing the words MND from the nurse practitioner we had at the local univesity. She worked for the "top" MND guy who -- if he's the "top" God help us. (we are both doing better without this guy) So we have been on our own for several months now. The local neurologist just says treat symptoms, but I feel like something in the dark is chasing me and maybe if I knew how fast it was running - it wouldn't be so scary.

I am currently in contact with a Mayo Clinic doctor who specializes in FTD/MND and there are VERY few of those guys. He is suppose to be in the process of setting up an appointment for my husband. He sent me some links to check out, one was to the als.org and then one that discussed food for choking, and another for equipment. He said that he may need a bipap for sleeping and some other things. But we don't have a diagnosed of MND, although this doctor said, from what I am describing it sounds like he has it. He did mention a few other diseases that are treatable (not cureable) that it can be. But - since we have been watching for this to appear and now that it's appeared I don't think it's one of the "others". They have to be ruled out though.

Even if he has one of the other diseases, swallowing is a problem with FTD without any other disease process so -- we're screwed no matter what gets dumped on us now. I'm becoming anxious because he had surgery 7 weeks ago and my gut is telling me surgery has caused the progression to speed up. His face is drooping . . . I wasn't sure if this is a biggee or if it can wait. Plus he has accumulated more twitches. The calves twitch constantly, maybe 15 seconds between them. Some days they are more prominent but they are always present.

We live in a rural area so ALS clinics are far and few between. This doctor gave me links for that too, and they are in Chicago or St. Louis. Mayo Clinic isn't any farther and easier for me to drive because my husband sometimes climbs out of moving cars, or gets over stimulated in heavy traffic. Good Golly Miss Molly - you DON'T even want to know what goes on then. It ain't pretty.

Midnight I laughed at your buttless evaluation. My husband don't have much butt left and he blames me for always chewing on it. I've been following links that I come across and they are very informative.

Cindy
 

Midnight

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Yes...I'd say press your doctor...

I reread your posts and just was thinking that although chasing your hubby down a freeway sounds like a VERY stressful outing (to say the least), but I think I'd take my chances if I were you and just get him to a diagnostic clinic as fast as you can get in. If there is one thing I have realized it is that doctors are overwhelmed, often blindsighted by their own specialty, own lives, sometimes desensitized (maybe it is a coping issue?) & have health ins company issues & liability issues to contend with and all of this means one thing...that you have to take your healthcare into your own hands. Unfortunately this means that if you are not pushy & don't educate yourself, you will often not get the care you need. Some people seem to see the "best" doctors and it takes seeing somebody else to finally get what they need. It seems like no matter what though, the squeeky wheel is getting the oil. Even with being pushy & knowledgeable it seems like people don't get what they need sometimes and and have to keep trying until they do. Just don't give up; you obviously know something is really wrong. Thank goodness he has you. I hope they figure out what they can do to help your husband, and it turn, your family. This is a lot for a wife and a mom. Maybe they can slightly sedate him for your drive home :) Then you won't have to chew his *ss. :-D Either way, seriously, he is lucky to have such a concerned & caring person to help him at what sounds like his greatest time of need. These are the hardest times to stick it out for eachother, but the times we need to the most. I really hope to hear that you get the help your family deserves . . . soon.
 
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