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mingho2009

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I am 21 years old male and have had bodywide twitching for the last 11 months. I am concerned about als, because I twitch everywhere eyes, legs, thigh, chest, lip, forearm, along with cramps in my feet. They come and go sporadically, if I exercise the fasciculations are more noticeable. My left arm/leg is also smaller then my right, but I am right side dominant, so I don't know if this is normal or not. I was trying to test for clonus myself but I am not sure if I am doing it correctly. If I bend my foot upward towards my ankle it shakes until I let it back down. Is this clonus? Can you test clonus on yourself, or can only someone else do it? I am thinking that I have BFS... should I really be worried about ALS?

Thanks for your help in answering these matters.
 

Al

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Clonus (from the Greek for "violent, confused motion") is a series of involuntary muscular contractions due to sudden stretching of the muscle. Clonus is a sign of certain neurological conditions, and is particularly associated with upper motor neuron lesions such as amyotrophic lateral sclerosis (ALS), stroke, multiple sclerosis, spinal cord damage and hepatic encephalopathy. Magnesium Sulphate overdose is also know to cause clonus. Unlike the small, spontaneous twitching known as fasciculations (usually caused by lower motor neuron pathology), clonus causes large motions that are usually initiated by a reflex.

Clonus is most common in the ankles, where it is tested by rapidly flexing the foot upward (dorsiflexion). It can also be tested in the knees by rapidly pushing the patella towards the toes. Only sustained clonus (5 beats or more) is considered abnormal.

Clonus appearing after ingesting potent serotonergic drugs strongly predicts imminent serotonin toxicity

from Wikipedia
 
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mingho2009

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Do you think I have clonus from what I described when I flex my foot upwards at my leg it shakes or quivers until I unflex it back down. Is this clonus, or is this just a natural shaking because I am putting a stress of my foot?

Thanks again.
 

Blizna

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Hi,
I dont think you can test clonus this way, it would need another person to hold your leg and suddenly stretch the feet.

Anyway, with twitching for so long you dont have ALS...read here, that if twitching was first sign, slight weakness was detected. ALS doesnt start with widespread twitches...and definitely doesnt start in whole body - starts in one limb or with bulbar symptoms. I know about one case where twitching really preceded weakness - it was isolated, constant twitching in the thumb muscle. After 4 weeks that person had visible atrohpy and after 8 weeks the muscle was dead.
Dont worry.

I have the same, Im 23 and Im also twitching for almost 11 months :)
 

boxer22

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Hi,
I dont think you can test clonus this way, it would need another person to hold your leg and suddenly stretch the feet.

Anyway, with twitching for so long you dont have ALS...read here, that if twitching was first sign, slight weakness was detected. ALS doesnt start with widespread twitches...and definitely doesnt start in whole body - starts in one limb or with bulbar symptoms. I know about one case where twitching really preceded weakness - it was isolated, constant twitching in the thumb muscle. After 4 weeks that person had visible atrohpy and after 8 weeks the muscle was dead.
Dont worry.

I have the same, Im 23 and Im also twitching for almost 11 months :)


Hi Blizna,
I have been reading some of your post to other members here, and was wondering why you keep telling other members that are concerned about ALS that they don't have it. How do you know? I agree with you that her symptoms do not sound like ALS more like BFS, but i don't think you are in any kind of postion to tell someone that they don't or do have ALS. And you also keep saying that "ALS doesn't start like this". How do you know? Everyone with ALS is diffrent, and it can start diffrently for everyone. I have heard pals say that they had local twiches that never stoped until the muscle was dead, and I have heard other pals say that their twiches started everywhere. You need to realize everyone is not going to start the same way. And not everyone has a text book case like you are thinking. I understand that you have done your research about ALS, but you have to remember that most sites on ALS are going by the majorty of cases, but not ALL. Research can be good but it can also be bad. On one site it says that with BFS you can twich everywhere even in your tongue. And on another site it says that doctors dont beilve that people with Bfs can twich there. There are so many diffrent sides of the story out there. And if there is one thing we have learned by being on this site is that ALS is a very very complicated disorder that is really hard to understand. If you beileve everything you are saying about ALS and about how it starts, why are you still here if you know you don't have it? I know you are trying to make other people feel better but you should never tell anyone that they do or don't have something because of what you have read. Please keep that in mind.

Ashley
 

mingho2009

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Thanks for the replies, I was under the impression that ALS in someone who is 21 is classified and Juvenile ALS... and it is usually familial related and not sporadic. No one in my family has ALS so do you think I am in the clear? I don't want to go to the Doctor, becuase he will probably think I am crazy.

Thanks
 

Blizna

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Boxer22: I used to study medicine for some time so I can afford more details: Als starts in different ways, you are right, but never with widespread twitching. Its impossible due to way how nerves are damaged - its progressive...pals with widespread twitching have more developed ALS, altough there were a few cases when only doctor found out their weakness. Also, with widespread twitching and no weakness, it cant be als. Exceptions are possible if there was another nerve damage that precede ALS.
Everyone goes different way but the same direction. Dying muscle twitches - thats the fact that even you cant change. Its called reinnervation. It takes places after 3-4 weeks after denervation, thats why EMG is so much-telling.
I dont want to argue here, if you like bringing anxiety on people with benign fasciculations, then you probably found right site...but all of ALS exceptional cases were always explained (i.e. weakness in muscles that you dont use much so you dont notice it weakens).
BTW: Most misdiagnosed ppl are in USA, since medicine is easy there (in opposite of europe universities, lol, I have heard EMG in USA doesnt have to be done be neuromuscular specialist but by some "technicians"!).
Tongue twitching is problematic - tongue is innervated from bulbar area so its not the same as other muscles..so nobody knows exactly how its related to BFS, but surely there are BFSers with tongue twitching for years.

Well, this was my last post, I have no problem with dont going here. But YOU should study real medicine instead of pointing out on exceptions (that acutally arent unexplainable exceptions).
 

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+1 to Blizna's post

Also, I (and I guess everyone who comes here undiagnosed-ed) am repeating to myself just too many times thats its probably ALS, I need someone to tell me that I'll be fine, even be it for a momentary comfort. If I turn out to have ALS, well there is nothing anyone can do *shrug*
 

boxer22

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Boxer22: I used to study medicine for some time so I can afford more details: Als starts in different ways, you are right, but never with widespread twitching. Its impossible due to way how nerves are damaged - its progressive...pals with widespread twitching have more developed ALS, altough there were a few cases when only doctor found out their weakness. Also, with widespread twitching and no weakness, it cant be als. Exceptions are possible if there was another nerve damage that precede ALS.
Everyone goes different way but the same direction. Dying muscle twitches - thats the fact that even you cant change. Its called reinnervation. It takes places after 3-4 weeks after denervation, thats why EMG is so much-telling.
I dont want to argue here, if you like bringing anxiety on people with benign fasciculations, then you probably found right site...but all of ALS exceptional cases were always explained (i.e. weakness in muscles that you dont use much so you dont notice it weakens).
BTW: Most misdiagnosed ppl are in USA, since medicine is easy there (in opposite of europe universities, lol, I have heard EMG in USA doesnt have to be done be neuromuscular specialist but by some "technicians"!).
Tongue twitching is problematic - tongue is innervated from bulbar area so its not the same as other muscles..so nobody knows exactly how its related to BFS, but surely there are BFSers with tongue twitching for years.

Well, this was my last post, I have no problem with dont going here. But YOU should study real medicine instead of pointing out on exceptions (that acutally arent unexplainable exceptions).




Thanks for your reply. If you know so much about ALS why did you come here in the first place? You should know you are in the clear then right? My intentions are to never bring anxiety on to people who most likley have BFS. But I don't think you or me are in any kind of postion to tell someone else that they for sure don't/do have ALS. We can just give our honest opinion about what we think. I have a few people in my family that not only studed medicine but have degrees in medicine and now work in the field. And not one of them had to study ALS... . Your whole speech about "what happens when you have ALS" and what it does to your body "reinnervation" I have read all the same stuff over and over to, but just because I have doesn't make me A speclist In ALS and give me the right to diagnose people. Sorry thats just not how it works.
 

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We run into this controversy from time to time around here. I think it happens when people come here anxious and looking for advice or answers that their own doctors cannot give. Logically, if none of their doctors can give answers, then we, who are not doctors, cannot either. But logic and emotions are too different things.

Fortunately, if someone is told "You do not have ALS" and later it proves they indeed do have it, no harm has been actually done. It is not like telling someone they do not need to take cancer treatment, or they can throw away their heart medicine. Now that would be dangerous!

I think we do harm when we feed into somebody's anxiety. Again, if we tell them they are fine and 2 months later a doc proves us wrong, all we did was give them 2 months of peace of mind. Maybe it would help if we all prefaced our statements with the caveat, "I am not a doctor but..."
 

boxer22

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We run into this controversy from time to time around here. I think it happens when people come here anxious and looking for advice or answers that their own doctors cannot give. Logically, if none of their doctors can give answers, then we, who are not doctors, cannot either. But logic and emotions are too different things.

Fortunately, if someone is told "You do not have ALS" and later it proves they indeed do have it, no harm has been actually done. It is not like telling someone they do not need to take cancer treatment, or they can throw away their heart medicine. Now that would be dangerous!

I think we do harm when we feed into somebody's anxiety. Again, if we tell them they are fine and 2 months later a doc proves us wrong, all we did was give them 2 months of peace of mind. Maybe it would help if we all prefaced our statements with the caveat, "I am not a doctor but..."



Hi cindy,
I really do understand what you are saying. Maybe it's just me but when i first thought that i had ALS i was so scared. I thought my life was over. I felt that since my life was over that I should give up on everything because nothing really mattered anymore. Well its been 15 months later and I know longer feel that way. I still feel I have ALS but I know longer think my life is over because it's not reguardless of what I have! I feel that I have worried so much about it that it has kinda in a weird way prepared me for the diagnoses that I think I will eventually get. I don't want ALS by any means but I have to face what might lay ahead. When people tell me things like "you don't have ALS" It doesn't make me any less worried. Maybe it helps some people. Just not me. I don't think we should alarm people who come on here looking for advice, especially if it sounds like Bfs. All I am saying is that we should never try to diagnose someone else and give them false hope. I feel like since I have been on this board it has made me a stronger person and not because people tell me that they don't think i have ALS but because I know that if it turns out that I do then I have so much suport and resources and that I am not alone!

Ashley
 
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