Aa
SOME SPECIFIC FASCICULATION QUESTIONS
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!
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!
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
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
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! :)
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! :)
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
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
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
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
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
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
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.
That is just a piece of ****!
OK, that is dan's question for today. Be expecting the same questions over and over. He is determined to dx himself with ALS.
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!
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
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
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 :)
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 :)
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
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
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.
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!
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!
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.
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.
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!
I agree with Betty and the other like posters. Mind your own business!
"I agree with Betty and the other like posters. Mind your own business!"
LIKEWISE!
LIKEWISE!
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
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
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
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
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
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
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
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
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.
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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
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
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!
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