How long after fasiculations do we need to follow up on emg test ?

[Mark Anthony]

Hello Doctors.  We had a very hard hit in the nueromusular forum over the weekend.  A person "we know as Sarah" anounced she had ALS.  She was pregnant etc and didn't have the emg done while pregneant.  Her previous posts suggest of complaints 16 months prior to her dx.  We, in the nueromuscular forum have been under the impression that a clean emg would give many of us peace of mind conerning a dx of als.  My questions are as follows.


1.  Even with a clean EMG,  with continued fasiculations, normal nuero examinations,  do we need to continue seek emg evaluations for possible ALS diagnosis.  We need the truth and not soothing words here.  

2.  We are under the impression that fasics present after motor nueron involvment and thus a emg should pick up abnormal activity if fasic's are present and or occurring during the EMG, whether or not witnessed by examiner.

3.  Does eyelid twitching occur in als?

4.  I have been under the impression that fasiculations from ALS are not felt but very fine .  Are they felt?  Do they start off by being felt and then become fine as to not being felt?

5.  How far apart should emg's be conducted to rule out ALS?  I have had two in four month intervals.  Is this the norm or should I wait and see ?  Wait a year , two years ?
6.  We are of the opinion that weakness, fasiculations, atrophy occur in that order.  Is this the norm?  

7.  Many of us are upset and unerved at the news of one of the begnin persons in our forum became als dx.  Therefore please answer this question as accurateley as possible.

8.  DOes benign fasiculation Syndrome represent a condition in which doctors are "waiting for further symptoms before dx's disease etc?  In other words,  is this a waiting per

[CCF MD -- Ignore this post]

There's a whole gaggle of neurotic "twitchers" who have assembled on the MGH Neuro-forum. They ask the same questions there - and here - repeatedly. No level of reassurance, test results, or anything you can say will convince them they don't have ALS. Many of them now post on this forum and ask the same question or a slight variant repeatedly -- typically using pseudonyms so you won't catch on to the underlying psychiatric problem that brings them here in the first place. There appear to be many folks posting on this site with legitimate medical problems who really do want help. I'd recommend that you concentrate on them.

[s.]

  We don't know if Sarah was offically Dx with AlS. She never posted that. Her mother, however, sent a post to General Neurology that suggested that she had been reading the ALS forumand "become convinced" that she had ALS. This is very different. As well, everyone should know that Sarah is young (22) and seems to be having other emotional stressors. She recently posted that she had her baby with no mention of ALS DX. and then within days reported that she was going to be on a feeding tube next week. Many on the neuromuscular forum feel horrible about it but at the same time are really wondering if Sarah has something else or is going through a very emotionally hard time.

[Frank]

In regards to the questions.  I too,  am a regular visitor in the forum where "SaraH" posts her articles etc.  I know that the forum is very inactive and very conservative in it's activities.
Any information would be appreciated.  As per the previous comment,  Sarah never claimed to have had an official dx,  however ,  she did post that she was having a feeding tube put in within days of giving birth.  I would find it odd that a person with ALS , in that state, could have a normal vaginal deliverly and yet still have the need for a feeding tube?  Also,  many now believe that EMG's mean nothing unless they are done for two years or more since her symptoms started 16 plus months ago...........let us know what you think Doctors.

Thanks for your forum.   ANd yes I will be coming to your clinic to have my emg and myself evaluated soon.  Could you post what type of insurance you take. Or direct me to where I can find this out. I have "Health Partners."  Do you take HMO?'s

[Wayne]

I know the posts you're referring to. Don't forget that in Sarah's early (first?) post, it was her husband who twitched. Then the nature of the posts turned to her. If you read through all of her posts, you reach one of two conclusions. She has serious psychiatric problems which should be considered when reading her posts, or the last and some or all of the previous posts are fraudulent. This is the risk of believing what you read via the internet. There's no editor (to speak of) and no way to know what's fact and what's fiction. I wouldn't give the "Sarah story" a second thought. Consider the advice you receive on this forum (these are real doctors not imaginary victims), seek competent medical care if you feel you need it, and consider and follow that advice. The neuromuscular forum at MGH has become a melodramatic soap opera and - though entertaining - can cause some damage. Read it with care!

[Doctors why are you avoiding this posts?]

Many of us need to hear yoru responses to these questions. Please respond.

[Jaymee (try a little patience)]

Read the information for posting here.  No one is avoiding anyone.  I sure understand how busy these doctors are.  And it says here that some questions require research and can take up to a couple weeks to provide an answer.  That's why they remind us to call our own physicians for urgent and immediate info.  But really Howard, no one is avoiding you.

[someone]

Please be patient with the physicians here.  As for Sarah, 2 people spoke with her mother.  She is not getting a feeding tube, and she has not been diagnosed with ALS.  She was suffering from depression before the baby which has progressed since having the baby.  If anything, in reading about all the information she did about als, and her twitches, she developed a somatoform illness in which she needs treatment for.  Her physicians as well as her mother have stated that she does not have als.

[Read earlier postings!]

If you scroll down the forum, there have been many responses on twitching. Hey! You guys have been twitching over MGH for MONTHS, use common sense and realize if it was ALS you'd know by now!

Get out there and enjoy our lovely world!

[Thank you, "read earlier postings!"]

That's what my doctor has been telling me for months. If you read every one of these questions and the responses, you'll see that the VERY FIRST THING these physicians point out is that fasciculation are only significant if they appear IN THE PRESENCE OF WEAKNESS AND ATROPHY. I know fasciculations are troubling and annoying (believe me, I know) but they aren't disabling unless we allow them to be.

[Mark Anthony/dissapointed]

I am dissappointed that A doctor would post "Ignore" on this post.  I can understand the routine and fustration on their part as doctors. However,  we would like to know the answers to the questions posed.  We need to hear the answers because over in the forum their are conflicting information on these exact questions.  I for one was looking forward to the anwers.  IT would of allayed my fears.  SOrry doctors if we offended you.

[Another thing]

The poster was wanting to clarify time periods,  emg intervals, and at what point a person should be able to "reasonably" put aside the issue of ALS onset.  I don't thing describing us as gaggling, crazy minded ,  twitchers is nice way to talk to frightened individuals.  Just a thought.  Yes you have posted many answers......thanks for doing just that.......but please understand that information shared , over a period of time , is diluted with mistruths, etc.  Thanks for your efforts doctors.

[Not the CCF Doctor... a mistake]

I posted the comments about neurotic twitchers. For some reason, the system posted my comment as the "answer" to the question. I don't know why and certainly didn't mean for it to happen. On the other hand, I stand by my comments. I'm a "twitcher" too and share the anxiety others express over ALS. It's not normal however for people to keep asking the same questions OVER AND OVER and disguising themselves (by changing names) to post the same question or some silly version of it. The CCF answers are consistent reliable guides. It is neurotic and obsessive/compulsive behavior that drives people to dominate these forums in this way. The last straw for me was the whole "Sarah says goodbye" nonsense. It scares new arrivals to the forums who don't know any better and it wastes other people's time and energy.

[steve]

I don't really understand the doctors reaction. I don't appreciate being insulted by this doctor because I am one of those "neurotic twitchers."

I have been to two neuros who don't know what the hell is wrong with me. And no, it is not all in my mind. I have night after night of no sleep because of tremor, twitching, and cramps. I havent had a solid night's sleep in six months.

But I guess this doctors reply is consistent with the attitude I receive from the two neuros, like they dont listen to us becasue we are just delusional fruitcakes.

In my opinion, this is one of the biggest problems in medicine. I can only draw on my experience from the patient side of things. But the God-like mentality is not needed.

Most doctors are not like this, but there is small percentage that is. And for those doctors who actually listen to us and are concerned, my heart and grattitude goes out to you. You are the true leaders in this field.

[Steve......CCF imposter!]

What s stupid thing for you to do. How old are you? This is a place where professionals take their time to help us for no cost. All your post did was stir up trouble.

I haven't posted here myslef. But rely on these doctor's wisdom because they know more about what is going on than my neuros do. So don't screw it up for us by starting some kind of personal issue war here.

[Concerned Poster]

My intention is not to disrespect any of you who have posted about the "twitches".  But, haven't you ever heard of enough already?  Geez...some of us have only posted once or twice on here, and are patiently awaiting responses from the physicians.  If the kind doctors have to sort through all the "drama posts" none of us will ever get responses.  It seems like many of you have it in your head that you have some disease that your doctor says you don't have.  If that's a valid concern, go to another doctor.  How do you expect a forum doctor to diagnose you over the net, or better yet, how do you expect a forum doctor to disagree with a physicain who has actually examined you?  I understand many of you

[To Steve - Yeah you, knucklehead...]

See my post above yours. I already explained that I simply posted a comment like everybody else and for some reason UNKNOWN to me, the system posted it as an "answer" from the CCF docs. If you read my post, it is clear that I wasn't speaking for them. I refer to them in the third person. I have a feeling that the way you've overreacted to this tells us all we need to know about your twitching and problems with doctors. Good luck -- you're going to need it!