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Blizna

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Im sorry for next thread but I promise its my last question:

PALS describe fascics as non-stop twitching that is very frequent, well? What about random and stronger twitches (that usually makes the muscle part to jerk)

For examle: Twitch in the calf...after 20 minutes twitch in the elbow...after 15 minutes twitch in the arm...after 20 minutes twitch in back.

Could this still be als? These twitches are common at morning when I stretch muscles, later its hard to "recruit" them. Have it for 2+ months, no other symptoms.

Thank you!
 

CindyM

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Hi Blizna, sorry you are not gettign answers but we none of us are doctors here. Once you go to an ALS clinic and get a definate DX, this is the place to come for information on how to cope and how to prepare. Meanwhile, quite a few of us are in the waiting stages as ther is no test for ALS and the only way the docs can tell us for sure is if and when the symptoms progress to the point where people are impaired. Sorry we can;t be more definative. Cindy
 

Sandy Loam

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Blizna, a few years ago, I was experiencing twitches on my lips lightly, then my eyes , then my fingers, back to my eyes, then my forhead, then somewhere else. These twitches would not last for days and continually moved around my body. Most of the time the twitches were not even noticable to other people, but certainly distractng to me.

Now, remember this was years ago, I will suggest more than three (3) + years ago, but less than four (4).

So, quite by accident I happen to have a very close friend that happens to be a Doctor as well. I subtly quizzed him about this twitching let us say two (2) + years ago and he stated very casually that twitching tends to be more of an annoyance than a medical issue unless................the twitching locate in a specific area and stays in this area indefinately. This advise was free, which tends to concern me always. However,he is a professional and a friend, so the fact that he laid it out with such clarity gave me comfort then. But, with my existing condition that same advise is freaking me out now.

Let me be clear, he is not a Neurologist, nor am I, but personally when I hear your questions, I tend to think that you have little to be worried about today. That said, if anyone of these rascal decide to locate in one stop and you recognize muscle wasting or Atrophy..................perhaps it's time to re-think everything I have share.

Good luck regardless.
Sandy
 

guwainengle

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That question could actually get a $1,000,000 answer if really anyone can prove which answer is correct. To many different opinions and professionl thoughts-- THe text book says that twitches in an isolated area that are ongoing is a good symptom- BUT-- if you read alot of peoples comments that have been diagnosed as well as published articles-- you could have random twitches/fasciculations as an initial symptom which can occur all over the body. Even ALS specialists sometimes dismiss this kind of symptom as BFS. The key is two fold-- An EMG by a reputable nurologist that is familiar with ALS, and follow-up a few months later.... And no additional symptoms popping up , such as atromphy, weakeness, or the standard identifiers. I do not think there is a correct answer to this one. And I am one of the worst random twitchers you could ever meet. Hopefully on November 6th I can put my mind at ease when I have follow-up EMG tests. Unfortuately I am expecting bad news.

G
 

Blizna

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guwainengle: I dont think so. The medical books and neuros say that twitches in isolated part are bad - usually ALS beings in twitching in hand or leg. Not both - its because how the disease progresses. I heard its impossible to have fascics all over the body without any other symptoms.
Some people here had twitching as their subjective first symptom but it was in one located region - typical for ALS.
But I agree there can be exceptions, however ALS fascics never go away, as some people here confirmed.
 

guwainengle

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I hope that is the case-- mine was all over-- primarily legs and face-- now all over-- not just 1 initial area-- but the cramp started in 1 shin and now in both legs-- but I do have some leg weakness-- hope it is just benign. Also have almost a trembling effect in legs and arms.

G
 

guwainengle

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Blizna-- I am sorry-- when I wrote that twitches in an isolated part and ongoing is a good sign-- I ment that it is a good sign that it is ALS. I just forgot to put it in there-- G
 

Blizna

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guwainengle: Oh, so. Dont worry - if your weakness went away just for one day, most likely its not ALS, since ALS is progressive and once you lost control over the limb, you never get it back.
Many people with BFS have temporaly weakness, cramps (BFCS) and strange sensations. Look at aboutb fs.com if havent done it already. Only 6,7% ALS patients will start with fascics and during exam there always was found abnormalities (brisk reflexes, atrophy and weakness - these people just didnt notice it). Even if you would be so rare and belonged to these 6,7% most likely it would progressed in a few months. How long are you twitching? What about anxiety/stress? As my neuro and psychiatrist told me, if you know symptoms and are really worried, you can easily "create" these symptoms. They told me about patient who cant walk for 6 month due to anxiety (or something like that). He is OK now. Isnt your "weakness" excerise intolerance so common with BFS?
 

guwainengle

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I wish the weakness would go away-- Everything getting worse-- Thanks for the website-- Look at it almost daily but twitching/cramping and weakness is progressing- I have been to many doc's-- they do say BFS at this time- but I am having twitching in muscles that are not relaxed. Painful cramps have set in-- I wish I could exercise like I did back in January. Even walking and driving is a strain. My anxiety and stress level is high due to this condition. For now no abnormal EMG, but non since May this year- November will be next. I am with a good Neuro at Hershey ALS center which is somewhat assuring.

G
 

Blizna

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Im sorry to hear that :( I hope its anything else -myopathy,myosteanis or lyme disease. AFAIK if you have fasciculations (these are due to reinerving muscles) there should be certain EMG finding. I was told by 2 neuros that malign fascics would have to have possitive EMG (sharp waves etc) and often its done after a few months just to be sure nothing was overlooked. Have ALS with developed fascics and normal EMG..that would be pretty rare and probably impossible due to clinical way of how ALS looks like, I think everyone will agree. Painful cramps are typicall to BFS too, how does your weakness looks like? You cant lift your hand/leg or you just feel tired?
When you started with twitching? How long were you only twitching and what do your twitches look like (frequency, intensity, noticeable?)
 

guwainengle

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Back at the end on Jan 07 I started with a nervous feeling in legs-- then had chest and arm discomfort- Had the heart test- then by March I started with the twitching/fasciculations alot in legs and cramp/strain in left shin- then fasciculations went all over body - into eyelid by May and face later- Had ALS specialist in mid-May with normal EMG results and clinical was ok-- given neurontin but did not help. Fasciculations and cramps have intensified since then and also have mild tremor in arms and legs. Legs seem weaker but I still pass the clinical- Saw ALS specialist again in late July for another clinical- said wait till Nov to do another EMG but he was not too concerned- feels to be BFS. Legs are becomming weaker daily and cramps in hamstrings/ quads/ and calfs are pretty bad. ALS specialist also looked at tounge because I felt was quivering and he said it is nervous tounge. I have constant random twitching that is killing my sleep at night-- 2-3 hours if I am lucky. I try to get a nap in during the day if possible but I work many hours and cover 3 states. Also having alot of cracking in joits of ankles and knees. The long drives make me cramp even worse. I just saw local Neuro 2 weeks ago for follow-up but that was worthless for the 5 miutes he saw me. No diagnosis of anything-- but I know something is definately wrong. After Nov. I may go to see if I can get to John hopkins if nothing improves.

G
 

guwainengle

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I don't have that look in my hands yet-- but fasciculations occasional between thum and pointer. I am just waiting on the atrophy to begin-- i did measure certain points in my legs and my left leg in some areas is a little smaller than my right leg- calf area- i have documented this. I think though because I am right hand dominant and our legs and feet ane usually not totally identical there is no need to conclude atroph yet. but I am watching it. My grip in my left hand is compromised somewhat - but I see it and the Neurso's do not. When are you going back to Hershey again? And is it finally to see Dr S?

G
 

ltr

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G - we have many similar symptoms from the beginning, the nervous feeling in your legs, chest and abdomen. Only it did effect my heart, though I do not have any heart problems. The cardiologist now says it was from the polymyositis. Could you ask your neuro to resolve all your issues by doing a muscle biopsy?

Blizna - you have become very informed about twitching. Thanks for sharing what you have learned from the docs and your own research.

Annmarie - you know that I think you have some myopathy, maybe metabolic or inflammatory, going on.

What the group of us has to remember is, we have been on this forum 6-7 months and none of us have anything that points to als, i.e. drop foot, slurred speech, loss of any function. That definitely points to something other than als. We have to keep fighting to find out what's going on, but there is light at the end of the tunnel! :-D
 

Blizna

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Itr: Thanks, yes I was bothering at total 6 neuros with twitching :) so I hope my info will help you (and me).

guwainengle: Hope your next EMG will be OK..it still be many other things. As Itr says, we havent any serious troubles (knock on wood) and you know als usually progresses rapidly and relentless. My psychiatrist says (and this will tell you any doc) dont watch yourself too much! If you check yourself too much, you will see what you want to see.

Have you tried any medicaments like Klonopin (Rivotril) or anti-depressives? All you describe can be psychical -due to anxiety /even unrealized anxiety, fear of ALS/ and stress. Especially sensory disorders are unusuall for ALS (well, in books you can find they never go with ALS, but some people here describe them)
 

guwainengle

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I have had Klonopin/ Flexeril/ Baclofen/ Neurontin/ Valium and others. Wellbutrin- Prozac.. Which caused everything to be worse due to serotin reaction. I hope it is all anxiety. But I am progressing pretty quickly in the wrong direction.

G
 
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