SOME SPECIFIC FASCICULATION QUESTIONS

[Dan]

HI

I know neuros Do not like to make the distinction between ALS TWITCHES AND BENIGN FASCICULATIONS, yet PLEASE try to answer my questions even if the answers will be relevant only for the most part of cases:

1.What  pattern is more typical for the initial twitching of als(initial!): A. Random twitches that do not seem to settle in a specific muscle (RANDOM POPPING - "a twitch here a twitch there but many of them...
or..  B. specific areass/spots of fasciculations that are widespread, but every muscle have specific spots where ONLY there , you find twitches.

*I never get a twitch again in a plcace  where It has twitched
never 2 twitches in the same spots for a long time. there are many of them, but each time, different spot, different muscle
MINE IS A.

* based on your clinical experience, which pattern is more typical for the inital twitches of als (A OR B), when you examine the patient first time. (I read somewhere that in als , each muscle has specific spots/areas of twitching, and these spots of recrurtent fasciculatins ARE found  in clinical exam - so B is more appropriate. IS it?

2.I know that als has assymetric onset by definition. well, are there cases of Benign fasciculation you have seen of assymetric pattern also? How common is that?
I was diagnosed with benign fasciculations, yet 80% of my twitches are left sided (left leg and arm) so I would like to know ,base on your experience, how common is assymetric pattern of benign fasciculations (more twitches in one side or limb)???
ARE most benign fasciculation patients symmetric or assymetric?
**** DEAR NEURO, I KNOW THAT MOST NEUROLOGISTS DISLIKE THESE DISTINCTIONS, BUT PLEASE ,  TRY TO RELATE TO THESE 2 POINTS as specifically as you can, especially to PATTERN A,B , PATTERN YOU FIND MOSTLY IN ALS AND MY PATTERN(A), PLEASE!

BEST REGARDS, DAN!  

[CCF Neuro[P] MD, RPS]

Dear Dan:

Fasciculations caused by ALS are due to dying muscle tissue (actually necrotic).  So, fasciculations due to ALS are always accompanied by muscle weakness and EMG changes.  Benign fasciculation are not due to dying muscle tissue, but irritated muscle membranes.  They are not accompanied by muscle weakness, nor are there EMG changes.  Fasciculations can be seen in a number of diseases, such as nemaline rod myopathy.  So, if there is muscle weakness with EMG changes, then fasciculations are due to a specific disease.  When they occur in isolation, they are usually of the benign variety.  Any and every neurologist will tell you this.

Whether they occur in specific areas of the muscle is variable.  In ALS they can begin in any muscle but usually it is the leg, but it can be the bulbar muscles, arms, etc.  This will vary in a particular patient.  Since muscle is not dying in benign fasciculations, they tend to be spread out and in a variety of muscle groups.  In the early part of ALS they tend to be in specific muscles, more distinct, because the muscle is dying. The literature indicates that benign fasciculations are usually more spread between muscle groups and can worsen with anxiety and fatigue.  They can reoccur in the same muscle groups and also be variable.

CCF Neuro MD

[goodgal31]

Hi Dan,

I always wondered what you asked to, not sure if this would help you, but I have twitched for several months now, no weakness yet.. they say or so, I have read, that by the time you twitch, your neuro exam should be abnormal.  I had a perfect Neuro exam and my twitching comes and goes, sometimes pretty intense (can see muscle move) and other times more suptle.  I've got other things along with my twitching, numbness at times etc.  I think its all stress related as it gets worse with stress and they say the body releases a chemical that actually makes the twitching worse.  Anyhow good luck and i'd be interested in what the Dr has to say, I know ALS is terrifying.  There is a medication to help relieve the twitch, although I prefer a large glass of wine! :)

[Betty]

From what I have read and learned about BFS or benign twitching is that it comes and goes with a sometime distinct pattern and a sometime not too distinct pattern.
I think its not that neuros dont want to its because you cannot.I have twitched for a while with many other symptoms and I have gone through the ALS scare myself and lost sleep over it...And i find that the stress of just doing that only makes things worse and causes me to be unable to enjoy life as a whole and the more you read and concentrate on it the more anxiety you have and the more convinced you become that you have something dreadful..I hope that the docs here can give you a plausable answer and get you beyond this scare.
Take care

[Betty Powell]

From what I have read and learned about BFS or benign twitching is that it comes and goes with a sometime distinct pattern and a sometime not too distinct pattern.
I think its not that neuros dont want to its because you cannot.I have twitched for a while with many other symptoms and I have gone through the ALS scare myself and lost sleep over it...And i find that the stress of just doing that only makes things worse and causes me to be unable to enjoy life as a whole and the more you read and concentrate on it the more anxiety you have and the more convinced you become that you have something dreadful..I hope that the docs here can give you a plausable answer and get you beyond this scare.
Take care

[cjoe]

Dan3,

I see you made your way over here!  C'mon bud you are asking questions that have no definable answer!  I am not suprised that the question went unanswered by CCF.  I hope your anxiety will decrease with time because at this point I Feel this is the only thing that can make you feel better.  Going through life afraid of the irrational is a waste of your time.  If I recall you're a pretty young guy.  Try to find something fun to take this worry off your mind.  I know this is your way of dealing with it but you have asked this question several times.  You might as well ask the CCF Neuro's about the definitive meaning of the Universe, there is the same chance of answering both-0.00%

Dan I have been through the same stuff and it is bad especially when you have a two year old and a wife depending on you.  But your age combined with clean exam and emg make ALS Very, Very Unlikely.  Do yourself a favor and try to do other things other than dwelling on factors that are highly unlikely and out of your control.

Good Luck,

Joe

[Diagnostic clue to ALS]

My pathophysiology professor said that the muscle in between the thumb and index finger atrophies early in ALS and is often used as a diagnostic clue.

[disagree with previous post]

That is just a piece of ****!

[mgh]

OK, that is dan's question for today. Be expecting the same questions over and over. He is determined to dx himself with ALS.

[barbara to pain and lortab]

Why don't you just ignore the question yourselves if you are tired of the same ole thing. Maybe Dan has an anxiety disorder that needs to be addressed by a psychiatrist. Make positive suggestions rather than criticisms and you will get farther along in life.

It was nice of the doctor to be so polite as to answer everyones questions on this forum even the ones on ohter peoples threads. You all out to be thankful not criticcal!

[Betty Powell]

Gee Whiz the majority of you should be ashamed of yourself. You say Dan is determined to diagnoise himself with ALS. Maybe he is just scared and looking for reassurance..Since you seem to know Dan so well. I assume he visits the ALS message Boards, which means to see him there you must be there too..Right????
Do you or have you been told you have ALS, Do you twitch? Hvae you ever been scared?  I know the ALS fear very well and how it will eat at you. There are many Docs that will push a patients fears aside and never address them in any way..Maybe all Dan needs is a Good reliable Neuro/Psych to help he to understand what he does and does not have and why. And help him to stop worrying about it..Because worry will change nothing..
You pay a doctor to take care of you..very good money I might add, they should be willing to take the time to address your fears and if not I would seek a new Doctor....
Dan Please do something to calm your fears because they will make you worse and you really don't want to be sick DO YOU? So get some help and as for the rest of you I sure hope people are more receptive and concerned and helpful to you should you ever have an irrational fear of a deadly disease or even a deadly disease because all of the responses i see here except for a choice few are just plain rude and disgusting and I pray  would never have to depend on any of you for comfort if needed.
Just my opinion...Betty

[Readers, help me out!]

I never can get here early enough to post a question, but you folks seem to be very knowledgeable, so maybe you can help me. Here's my case history, tell me what you think:

I am a 23yo male second-year medical student. I first started experiencing muscle fasciculations 4 1/2 weeks ago. The onset was incredibly sudden: I was sitting in a restaurant feeling fine when I started having a forceful twitch in my left index finger (yes, it was the muscle between it and the thumb that was twitching). By that night I had profuse and widespread fasciculations all over my body. Like an idiot, I consulted my pathology book which put the idea of ALS in my head. I subsequently did not eat for a week. I went to the student health service and was worked up for possible hyperthyroidism (my patellar reflexes were 3+ and my pulse was 104) but labs came back normal. I returned three days later and was seen by an attending physician who spent 45 minutes with me (kudos to him!)trying to calm my fears. He prescribed low-dose Ativan, which worked admirably for two weeks. The twitches mostly subsided, or at least I stopped noticing them if they were still there.

Then my anxiety returned. My appetite once again vanished, and the fasciculations became more profuse. I am by nature a raging hypochondriac, and I have been imagining (I hope) all manner of relevant symptoms since then (stiffness, weakness, etc.) but all pass when I quit obsessing about them. Rationally, I tell myself that I must obviously have benign fasciculation syndrome. But fears about ALS can make one a bit irrational. I do have a postural tremor in my right thumb when I hold it in certain positions, but no functional impairments there or anywhere else in my body. I don't know if the tremor was present before or not. I don't have weakness or obvious atrophyin any specific limbs. I do have general, subjective weakness, but I can still lift the same weights, etc. My fiance' says that I "shake" in my sleep sometimes (like shivering when cold). I often wake up with my heart racing (>100 b/m). I have lost about ten pounds in the past six months, but I hardly ever exercise and my nutrition isn't good. I have buttloads of stress in my life, including med school, upcoming board exams (which I should be studying for instead of typing this), I'm getting married in five weeks, and I just bought a house seven weeks ago. (All of this and the persistent, gnawing fear that I shouldn't have gone to med school in the first place). Oh, and I had an awful viral infection one week prior to the initial onset of symptoms. I do have generalized anxiety disorder as well as intermittent major depression, for which I just started taking paxil--too soon to see if it helps or not.

Sorry about the long post, but thanks for reading and thanks also in advance for any comments, advice, or reassurances you may give me. Who knows, maybe someday I'll be your doctor (BE AFRAID!) J/K :)

[Paul]

Dear Reader,

My understanding is that the gold seal on benign fasiculations is an EMG.  Since your situation bothers you so much, why not get an  EMG to put it out of your mind?  If the EMG shows no fibrillations or other indicator of neurological disease, you will basically be in the clear.  See

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8215252&dopt=Abstract

for more info.
Good luck,
Paul

[barbara to pain and lortab]

You admitted having an anxiety disorder and depression. Both can cause fears and worries about any physical discomfort. As far as shaking at night, do you drink alcohol on a daily basis to self medicate your anxiety? Alcohol withdrawal can cause night time shaking. I know it does in me frequently.

[goodgal31]

Gosh there are alot of twitchers out there!  Ok Reader, your under alot of stress, marriage, upcoming wedding, med school, exams, anxiety... your carrying a boatload of stress.  I to have twitched since March 13 to be exact, I remember reading about MS and how you get a twitch,  10 days later I started to twitch.  Was coninced MS, had a total neuro exam, No ms, now im wondering what else I have.  I have been referred to a psych and saw him he basically felt this was all anxiety propagated.  Its hard for me to totally grasp this but im on paxil (Reader guess what?  Paxil made me twitch worse) but it did control some anxiety.  So keep up with your paxil and just know your not alone.  I also had a bad virus prior to all this, a connection?  I get tingles all over my body, my soles of feet, face, then I moved onto peripheral neuropathy.. see its always something we have fears.. Who knows but here's to hoping we all stop twitching!

for the person who was critisizing the guy who posted with worries about ALS, its scarey to have physical symptoms that are constantly there!  He's afraid naturally.  I can relate, nobody wants to die a slow death and not be able to use their body. Its a natural fear for all of us and when this happens (the twitching) people get scared. Now give him a break and have some empathy!  You would not be following this thread if you yourself had no fears of ALS!  Baaaaaa!

[Another MGH member]

Dear Betty and Have no fear,

I totally understand your veiwpoints on compassion and giving Dan reassurances. Dan has posted almost 200 posts at MGH. We have all tried to answer his question faithfully and with compassion. But he will not believe us, nor does he believe his doctor. He was dx with BFS and has ahd all the tests. We have seen him continue on a downward spiral of OCD and depression. He asks the same questions over and over...all on the types of twitching and is one type of twitching indicative of ALS or something elge more than the another type of twitching.

You who are so quick to attack the MGH member or others calling em rude and inconsiderate are no better than the ones they are talking about. "Let he who is without sin cast the first stone!" Anyone remember that? I agree that the MGH members post here was a negative one, but this is a free society. And this board like many others is a public service. We, you and I, and everyone else consitute the public. Freedom of speech, freedom of expression....cmon...you remember those rights

I have observed that over the past six months, dan has gotten  worse. He refuses to seek any help with anxiety. He will not consider the use of medications to help with anxiety. He truly believes he does not have a problem, yet is evident to eveyone on the forum that he does have a serious problem.

You are welcome to go to MGH and read his posts. Know more      about what you are talking about before you make it personal.

[Becky]

You know, "Another MGH Member," it's really none of anyone's business whether or not Dan posts here or not.  And I have read his posts at MGH.  Even if he had made a thousand similar posts over there - he is free to ask a question here if he so chooses, and I believe he should be able to do so "unmolested", if you will.  It is not up to us to determine which questions are "valid".  In fact, as far as I am concerned, if it is a neuro question, it IS valid.  And it's Dan's question, not yours - what may be right for Dan may not be right for others.  Dan, remember this saying - it is one of my favorites:  "What other people think of me is none of my business."  

I agree with Betty and the other like posters.  Mind your own business!

[Another MGH member]

"I agree with Betty and the other like posters. Mind your own business!"

LIKEWISE!

[Betty Powell]

Thanks to those of you who agreed with the facts. And the fact is that Yes Dan does have a problem, But he has the right to post a thousand times without being molested per se.
I know the MGH boards well, I post there too. No I dont post 200 times about the same thing, but I dealt with my fear the fear that I believe most of you have had or have at one time or the other or you would not be on the message boards to begin with.
  Support and compassion is not measured in the amount of responses,its in the fact that you are there with a response as long as a person needs you to be. If you don't want to be there for Dan as long as he needs you or until he does realize he has OCD or another Anxiety disorder than just don't respond. But there is no need to belittle him or run him in the ground or try to embarrass him to the doctors here at CCF. If he has the twitches and is looking for answers then his ??? are as legit as anyone elses.
   And if you think about it it could very well be some of the postings at MGH that has helped him to become as fearful as he is right now. The postings go around in circles and there are so many different responses it is enough to confuse and scare anyone who is the least bit paranoid. Sometime its good to know there are others like you, but if you really read all the postings how many people in the forum have said I doubt my Doc, Could my Doc be wrong? My Doc said I had this,but now I have this, My Doc said this means nothing but the board says this....
   Think about how all this barrage of info affects someone like Dan. And of course he will read it. He is scared and searching for answers and just by that search has convinced himself he has ALS.
    I finally got the guts after reading a million posts on the what ifs and whys to ask my doctor about ALS and he looked at me and smiled and said Been on the Internet have'nt you....I smiled and he said I have never once suspected ALS in you at any point over the past two and a half years and I don't now nor do I think it will ever come to that. But some of the wanna be experts and Docs on the MGH forums would have told me otherwise..I am sticking with the man with the degree and 40 years under his belt in ALS DX....
    All I am saying is that all of us needed someone or we would not have went to the boards to begin with RIGHT?, So yes Dan may have OCD or something but does that mean he does not still need you support and encouragement even if it is over and over. Can't you give him that much in the hopes that one day it may sink in and you may help him.
     I have nothing against none of you at MGH, You are all good folks basically, but sometimes a few of you get in the attack mode and someone always seems to get hurt or run off like Maureen McL, remember her...She left the forum because of things just like this..Keep in mind its a public forum to help not one but all.
Just my opinion    Betty

And Dan, I am willing to bet YOU DO NOT HAVE ALS, get some meds to calm your fears and enjoy life, I have had the same symptoms and they get really bad for many years now off and on...Please get help and enjoy life

[cjoe]

Betty,
Please.  Have you ever considered Dan's line of questioning a bit repetitive.  I don't see the unqualified opinions of the MGH board helping him as he will re-ask the question later.  Maybe Dan3 is just a joker playing us all for fools.  If not it sounds as if he is having serious problems getting over this anxeity.

Let's show compassion to Dan and quit being enablers.  Nobody's trying to run him, however if he gets off the forum it would probably be the best thing for him.  

By the way people who might have OCD do not need to be reaffirmed of their behavior over and over like it is normal.  They need counseling by a professional to deal with it and improve their standard of living.  Sometimes showing support means not responding at all.

Joe

[Betty Powell]

Joe,
  Some people who are really scared are quite repetitive..and since when does any fear become OCD..Yes constant fear causes anxiety and let me be the first to say that constant twitching can cause anxiety for anyone...
  No we should not be enablers, but making someone look or feel like an idiot or stupid does not help either now does it..Yes he is repetitive, but maybe he was just searching for that right answer or a glimmer of hope that he had not yet seen...And no one who believes he is repetitive is actually required to respond now are they..Its their choice to respond to Dan or any other posters..Just as its Dans right and choice to post his questions and concerns without fear of judgement

[C Joe]

Betty you missed my point.  You had said in you above quote "yes Dan may have OCD or something".  I myself am a constant twitcher but I do not and can not afford to let this fear turn into an obsession that rules my life.  I can't say for sure what Dan3 does in day to day life, however, the tone of his posts indicate that he is most likely miserable.  If he is he should seek professional help in dealing with it.  

As far as the right answer he is not searching for it.  He found it 200 posts ago.  His comfort is found in the minute detail that has no bearing on his condition.  He can ask but people being people he'll attract those that are less tolerant.  Personally the only reason I post is to tell him that this does 0 for him.  What kind of hope do you mean?  Hope his BFS goes away?  Dan3 is not dying he is 24 years old.  The chances of him having ALS is damn near nil.  As far as Dan's right to post I am all for it because I don't know what tangent this kid is going to take next.  His posts are entertaining.  Betty surely you know how "people" will react to somebody like Dan.  He will be re-assured and attacked there is nothing you or I can do about that.  

Humor is one of the most important thing in life.  Don't take Dan's critics so seriously.  It just creates fader (spelling?) for guys like Kev over at MGH.  Kev if you read this huge fan of your posts!!  Dan seems to handle his detractors better than you do.  Take a chill pill Betty enjoy life cause it is short.

Joe

[terur]

I've been reading the post from Dan and all the replies.  Frankly I think he's pulling everyone's leg.  I think he may be Marc Anthony starting over all again.  
.

[Betty Powell]

To C JOE,
   I agree with you...Life is too precious to be argueing over stuff like this as a whole...I have learned that i cannot change anyones thoughts on the subject and all i can do as a person is reply to those that i feel i may be able to assist and not worry about what the others are doing or saying..i can see that the whole thing has not turned into my post but everyones game..TYou are indeed 100% right..Dan will have to come to his own terms and someone will respond to him and if the negative posts dont bother him why should they bother me right.....And Terri you are most likely right..I statred something over there i cannot stop from a simple opinion..I will let them have it but I am out of it..Thank You Joe and terri  Betty

[barbara to pain and lortab]

I must be obsessive to have bothered to read this entire thread which did not provide much useful information at all. The only thing I learned is the Doctor is very patient and knowledgable and other people are obsessed with Dan's Obsession!

[Another MGH member]

Agree with the previous post. This thread is not productive neither is the forum at MGH. With all that said, I am going to Disney Land!

[MelissaA]

What site is mgh??

[david]

I've been reading these posts for a couple weeks now but I have not been able to get a message in yet.  I have worked with a man that has just left my group due to ALS.  We were good friends and played chess on any spare minute.  After he left work, I hurt my shoulder and then a couple weeks later I began to get muscle twitches in my calves and over my body when sleeping.  This freaked me out matching the symptoms of my co-worker.  My shoulder has almost healed but there is still lots of tension there and it seems to have spread down to my lower back...  Could my very tight back tension be the cause?  In the beginning the twitching in my legs and over my body would keep me awake but now it has gotten somewhat better and the twitching has decreased.  But the twitches in my legs are still there and they do tend to be somewhat weak.  Yet sometimes I don't even notice the weekness and I feel fine but other times like when I wake up or after walking for a while there is fatigue and they are tired.  And it seems like when I am stressed out my legs feel weeker and my back feels tighter with a feeling of energy and the need to stretch down my legs.  I am 27 years old and I have always been pretty healthy.  It seems like for the past couple months I have not been able to think about anything else.  I am scared that I have gotten it from my co-worker somehow yet I have been told that it is not contagious... I hope someone has some input...

[Jon]

I have a question for the neurologist if he/she would answer I would appreciate it. I am a 15 year old male and for the last 8 months have had widespread twitching. What really scares me is the constant twitching of the tongue. I cant feel it but I see it. I went to my doctor and he said it was anxiety and I was fine. He would not refer me to a neurologist. I have no swallowing or speaking problems and I appear to have no weakness. My questions are.

1. The cases of ALS that have occured in teens were they the inherited form of ALS?
2. In regards to ALS is reflexes only of concern if they are asymmetrical?
3. After 8 months would I now have some sort of weakness?
4. Have you ever heard or seen Sporadic Bulbar ALS striking someone as young as 15?
5. Would a regular doctor have a general good understanding of ALS and if he thought anything was wrong he would of refered me to a neurologist?

Thank you in advance.

[Savannah]

I'm interested in the notion that bfs is just caused by irritable muscle fiber. I have bfs, an essential tremor, plus benign myoclonus. I am in no way worried about ALS, as I've already dealt with all this for 4 years without worsening (except the myoclonus is worse), and meds have reduced it by 50%. SO I wonder what CAUSES the nerve fiber irritability? I've heard of viral theories, but I don't think that applies to me, as I wasn't sick before all this. I border on hyperthyroid, but it's now under control. My symptoms began overnight, and I think I must have suffered some physiological insult that permanently damaged my nerve fiber! I don't think it's ongoing because nothing really shows up on blood labs. Could it have been related to an elevated thyroid? Or a low calcium level? Can these things permanently "do in" your muscle fiber? If not, what can. Thanks.

[SS]

Cut this out! If you know that Dan has been on 200 times then so have you! To everyone- Don't judge. Any one can be OCD when they are twitching
or have some other scary symptom. The internet can cause temporary OCD if you are not careful. Its called OVERLOAD!!!!!! Too much conflicting information. If you actually had to get up and go to the library you wouldn't find so much **** to scare yourself!! You'd find a couple of good sources(like this site and MGH) but not get completely overstimulated with 3000 different sites and personal stories with 3000 different sides of ALS. The threat of having a horrible disease is real for all of us. But forbidden knowledge of the details can ruin your life!

[Elizabeth Jane]

Dan, Lot's of folks care about you!  you are so lucky..and you are fustrated with your problems of twitching, etc. I think I have read some postings on the fibromyalgia forums and others but I did not realize you were so fustrated for the right answers!  I have anxiety! due to my family life and health problems..my daughter has anxiety and needs meds for it..panic disorder as well. I posted many times on the mgh forums a few years back about my vision..and visual problems..and fibro..and sle..and cns..and..and it goes on with no real answers to ones questions; that is not the ones you feel are the right ones..I have accepted my condition to a point where I can adjust to the changes going on with my vision and visuals..but that is not to say I am not still looking for answers, I am..but must "wait and see" attitude is the main  phrase...OK...let it go for now...give yourself a rest and then proceed again in another type of venue..research is one!  Chat forums are another...do not give up..your disorder will show it self in one way or another...but maybe? no als which is fairly rare...Good luck, Dan, and take care, see you on the forums, Elizabeth Jane

[grace]

I have to talk to dan. My husband was completely normal and healthy and started getting muscle twitches weakness, tingling etc...  he has had three emg's by an expert has seen 5 neuros had mri's blood test everything you could imagine. he even went to an ear nose and throat dr and had a tube shoved down his throat and the dr. told him there are no signs of als. the folowing day my husband went back to the ear nose and throat and said he didn't put the tube down far enough. The dr. did it again and told him there is no signs of als, they got in a shouting match and my husband was kicked out if the office.The ear nosr and throat dr called my husbands interist and told her that my husband is suffering from ocd. My children watched this whole thing unfold and it has been very hard. I finally got him an appointment with a world renoun als speciaist to put his fears to rest. The dr. (from columbia prespeterian in ny city) knew right away my husband needed a shrink. He talked to my husband for 40 min and then gave him an exam for 45min. he told my husband he was fine and couldn't have als because he didn't have one symptom of it. My husband believed that for about three hours and then returned to his beliefs. He said the dr. didn't know what he was talking about. this dr is one of the best als specialists in the world and my guy doesn't believe him. since then he has seen a dr who took this drs place while he went on sebat. this new dr also world renoun told my husband he didn't have one symptom of als.

He also told my husband that the muscle between the thumb and the index finger is the first to go. He also told him that by the time you have muscle twitches and weakness it's impossible to have a normal emg, my husband has had three.  He's on meds for depression and axiety and our lives have been terrible for 13 months. after all this proof he is still in denial, as a matter of fact, i'm starting to wonder if you are my husband using a false name like i did. Is that you? Please listen to me dan try to get on with your life. My husband is throwing his life away, i don't know how much longer i can stay with him. i did not proof read so please forgive mistakes

[jim k]

HI I have had myokymia since jan 83.  Which is what i think your husband has.  I have gone tho the same thing with doctors at first until they had more people popping up with it. It mirrors ALS.  I take 400 milligrams of dilatin to ease the twitches and vitamins and stopped caffine.  Caffine makes it worse.  Any questions please ask me.  By the way i still lead a active life.  Don't let it get you down.

                            JIM

[peggy]

I am new to this site.  I have been "twitching" for about 3-4 weeks now.  It started with pins and needles in my hands and feet that lasted for a week, then the twitches came.  All over my body.  I am a occupational therapist and fear ALS too.  I have worked with patients with the dx.  Can anyone direct me?  i have had an MRI, and the doc fesls it is stress related.  I have hypothyroidism.  What about Vitamin B12 and blood work?  Any responses will help.  I feel very anxiou about this.

[ellenc]

This entire thread has become surreal! Let's lobby for a
" twitching" forum on MGH...moderated by dan3! Just a little humour to lightn things up !

[Also Twitching]

Dan - I noticed something in your original post that I didn't see addressed by any of the responses I read.  I mentioned that you recently began taking Paxil.  A very low dose of Paxil was prescribed for me recently for the prevention of tension induced migraines.  About a week after beginning the Paxil, I started noticing some very pronounced twitching all over my body.  My doctor refuses to believe there is a connection, but if you do an internet search on Paxil side effects, I'm sure you'll find, as I did, many other Paxil patients who've experienced the same thing, and worse!  My twitching has yet to be officially diagnosed, but I am convinced that the Paxil plays a role.

[john treher]

its strange..for the first time in my life im just now experiencing widespread twitching & i quit taking ativan just one month ago..im having an emg very soon to dtermine if its something really bad or just a temporary withdrawal symptom the twithching started 3 wks ago

[John]

how long were you on the ativan..& what was your dosage?.i too got got widesread twitching after i quit taking ativan!!

[John]

how long were you on the ativan..& what was your dosage?.i too got got widesread twitching after i quit taking ativan!!

[John]

how long were you on the ativan..& what was your dosage?.i too got got widesread twitching after i quit taking ativan!!

[John]

how long were you on the ativan..& what was your dosage?.i too got got widesread twitching after i quit taking ativan!!

[skipatro]

Another twitcher here - terrified also like the rest of you.  My question is, do you notice that the areas that have been twitching - for instance your legs or arms, seem not really weak but more like tired out - like you have been working out?  I can still walk fine, lift grocery bags, etc... type 100 wpm, but my legs just feel "pooped" out after a day of twitching.  I am scared about this because I am not sure if it is what would be considered "weakness" or just my muscles are tired from all the twitching going on.  I am presently being worked up by a neuro, but he is not much help in giving me answers.  I can honestly relate and sympathize with each and every one of you at how terrifying this is.  I am beginning to think, after reading so many different postings on various web sites that twitching itself is a disorder that needs to be looked into more.  So if you can give me some feedback, I would really appreciate it.  Als, does anyone else notice that their twitching stops when they consume alcohol?

[skipatro]

Was doing more research on this twitching thing - have any of you taken Cipro - which is an antibiotic in the last year?  Found another web site where several people had taken it and then developed the twitches.  

[Suzie Lee]

Im another one of those worriers.  My fears started in Feb.  98 when I had cramping all over my body and then twitches in my legs that made me feel like my 2 legs couldnt hold my body.  Ive had 2 emgs since then which didnt  detect even the  fasiculations.  I have lost a pant size and still feel weak and the neuros cant tell me whats wrong so of course I tend  to fear the worst.  The Dr sent me to a shrink even though I lost the reflexes in my knees.  I really feel for the people   that dont seem understood bye their drs.  Like its all in our heads.  I wish there was more research done on these devestating diseases so we would have to worry ourselves sick.

[Mark Bellariva]

Hi everyone. Hi had twitches for over three years.
I have tried B-12 and potassium for some time, but the only time I got some resolts was after consuming a small amount of alcohol. It really seems to solve the problem for some time. Why?

[Caden]

I have been diagnosed w/ BFS.  I have twitches all over.  Also have small local pains in muscles that go away in a few seconds, and sensations that a cramp is coming on, but no cramp does.  My neuro is baffled by the fact that my CPK is elevated.  Does anyone else out there know if CPK can be elevated in BFS or Cramp fasciculation syndrome?  

Caden

[Dallas]

What is MGH?

[margaret]

I am also a twitcher and it has helped me to read all these messages because I didn't realise there were so many of us about.   I had a computer for Xmas last year and the following few weeks spent hours on end playing silly games.   Then my little finger and ring finger of my left hand went numb - not my right hand which I used on the mouse for playing games. After two months all my fingers of my left hand started to twitch and within a couple of weeks I was twitching all over.   I notice it all the time when I am resting, particularly in bed at night.   I get cramps and pins and needles in my legs too.   Diagnosis: Myokymia.   Still getting worse all these months later.   Had one EMG - awaiting another.   I'm scared - not of ALS but of some irreversible nerve damage.   Can anyone else relate to these symtoms, please?

[nancy]

Caden-Your elevated CPK levels are likely stress related as is the BFS.  As long as the twitching/pain is causing no problems that are debilitating-I wouldn't worry. Maybe get more exercise-go for a walk with your wife!

[lisa]

HI--HAS ANYONE WITH BFS EVER BEEN TOLD THEY HAVE BRISK OR HYPER REFLEXES? I ALSO HAVE BEEN DIAGNOSED WITH BFS. I HAVE BEEN BATTLING THIS FOR 7 MONTHS. JUST WHEN I THINK THE TWITCHES ARE GOING AWAY THEY COME BACK FULL FORCE. ALL STARTED AFTER A BOUT WITH THE FLU AND DOSES OF ANTIBIOTIC. I THINK THERE MAY BE A SOME SORT OF CONNECTION. I TOO, HAVE HAD 2 NEGATIVE EMG'S, BUT AFTER READING POST ON THESE FORUMS, MY ANXIETY LEVEL STILL RUNS HIGH. HOW CAN IT NOT? I AM A REGISTERED NURSE AND HAVE NEVER SEEN OR HEARD OF THIS SORT OF THING UNTIL IT HAPPEND TO ME AND OF COURSE I GOT ON THE INTERNET, BUT I DO FIND IT INTERESTING HOW MUCH WE ALL SEEM TO HAVE IN COMMON, OUR SYMPTOMS, ETC. I AM  SEEING MY NEURO THIS WEEK FOR FOLLOWUP  AND HOPE ALL GOES WELL- I WOULD LIKE TO GET ON WITH MY LIFE, BUT SOMETIMES IT IS HARD TO IGNORE WHEN YOUR MUSCLES ARE JUMPING ALL OVER LIKE CRAZY.