EMG or Not to EMG

[Jake_the_twitch]

I have been twitching for 1 year and 1 week. I have seen a Neurologist twice, at 1 month and at 9 months and both times he declared the twitching benign after physical examinations and history. He does not think additional tests like EMG are necessary. I have not pushed for them because of two reasons. Mental health professionals recommend that you follow the doctors advice and that doctors should never perform unnecessary tests for reassurance purposes only, as any test will be construed as a possiblity of a problem by the patient. The second reason is I really wouldn't want to know if I had an abnormal result because what difference would it make as there is no treatment.

Lately everyone is talking about a clean EMG means no ALS. Am I just being a scared chicken in not demanding the test? After a year am I in the clear anyways? I have a complete physical planned next week with my GP and should I ask for it?

[Arron]

With BFS, time is on your side. If you had ALS, you woukd be in a wheel chair by now for sure, no doubt. Screw what the mental health doctors say... if an EMG would easy your mind, that is YOUR choice to make, not theirs! It's your money...

I see no reason to have one, but I'm not a doctor. I am "up" on ALS though and have a really good understanding on how it presents itself, how it progresses and so on becaue I have done extensive research on it simply because I was scared I had it at one time too. The only thing I could do was read, read and read on the subject, so I did. After over a year with no weakness or loss of muscle control, you are in the clear for sure. Trust your neuro, it's what he does for a living and it isn't his first day. Most neuro's will tell you that ALS is so profound tha they can tell whether a patient has it a few minutes after they walk through the door because of the certain signs and symptoms, which you certainly don't have, so relax and take a breather... you are fine.

[hojo]

I was told that 90% of neuromuscular diseases reveal themselves within a year of onset of symptoms. If it were not benign, you'd have already begun to experience weakness, atrophy, lack of coordination, etc.

It sounds like you just have irritation of nerves endings, nothing serious. Over time will probably gradually decline.

I agree with your physican, the EMG isnt warranted unless the symptoms get worse. Take calcium/magnesium/phosphorus supplements to help reduce twitching. If you dont get a lot of sunlight then also take Vitaman D. Light exercise also seems to help me.

Good luck!

[Davey]

For some, an EMG is the only way they will have peace of mind. If you are obsessing about ALS, it will help and I recommend it. I was a steady customer at my GP. He finally broke down and referred me to a neurologist. When the neurologist found out how many times I visited my GP in the span of 5 weeks, he knew that only an EMG was going to calm my fears. After the EMG/NCV, I was 99% free of free. The only thing that completely removes the fear is time. Time gives the greatest assurance.

[Asterix]

At the moment I am struggling to force myself to take the decision to schedule an EMG. Unfortunately, though, I'm afraid of a false
positive result and the fact that, in case it is ALS, there is absolutely nothing to be done about it anyway, so actually I'm not sure if I really wanted to know if I have it or not... I mean, after having made the the big mistake of looking up "twitching" in the internet, I now know
what a great bliss simple ignorance can be !

I really do not know whether I should go for the EMG or not.
I mean with ALS this is totally different from the situation in other serious diseases where there
is a chance (and be it ever so slim) for treatment if it is detected early on.
For example: A few years ago I went through a cancer scare eposide with ominous persistent abdominal pain.
Back then I did not hesitate much and scheduled for a gastroscopy despite the fact that I feared the possible bad outcome like hell. *BUT*, and this is the great difference from ALS, I knew I would have a chance to fight the disease and the earlier it was detected the
better my chances would be. So I forced myself to take the test (which, of course came out negative)

But if the diagnosis you fear is
ALS then the outlook is that bleak
and devastating, hopeless, that
I'm really not sure If it would be a good thing to know definitely if you had it or not.

Another thing to take into account is the danger of a false positive
diagnosis: This is a common problem
if you persue too much (medical) testing: There is always the
possibility that you find "something" if you're only looking for hard enough. So maybe, even though you are totally fine and healthy, the EMG could still be inconclusive or they could find some mild signs, suggesting "possible ALS" or something like that. So I do not know how good the
sensitivity of EMG testing is with respect of such "false positive"
results. But, for example let's assume the "false positive rate"
of EMG's is, say, 5 percent.
Now if, on the other hand, the probability that bodywide twitching
is from ALS rather than BFS, would be much less than 5 percent then
it would not make sense rationally
to undergo the test. (the danger of
a false positive EMG would be greater than the danger of having ALS)

(unfortunately I do not know the real numbers so this is a hypotethical example only to illustrate the principal dangers with false positive or "over- diagnosis")

On the other hand, of course, there would be the *GREAT* benefit of mental relief *IF* the EMG comes out totally clean ...

So in summary: To EMG or not to EMG ? I do not know the anser

Anyone help me to make up my mind ???

[DogBone]

My opinion for what it is worth -- My doc (Dr. Brohmberg) head of the ALS clinic here said that he does not do EMG's without weakness or an abnormal office exam. Although my first neuro gave me one before I got to him and they found a fasic and some poly-phasic motor units. With the poly-phasics, anything less than 15% is normal and mine were 10%. With ALS it is around 60%. So, obviously I knew I was the one case in a million where it was early stages of ALS. So, after the EMG, I was more of a backet case than before. If you neuro (ALS specialist) does not think you need an EMG then I would believe the guy. However, I understand paranoia and often we just have to have it -- we are so irrational sometimes aren't we?

[Asterix]

DogBone,

I can relate so much ! your post illustrates the point (EMG vs. not to EMG) very well:

.. found polyphasic units ...

So, after the EMG, I was more of a backet case than before.

that's EXACTLY(!!) what I meant
when I wrote:

Another thing to take into account is the danger of a false positive
diagnosis: This is a common problem
if you persue too much (medical) testing: There is always the
possibility that you find "something" if you're only looking for hard enough. So maybe, even though
you are totally fine and healthy, the EMG could still be inconclusive or they could find some mild
signs, suggesting "possible ALS" or something like that

In the meantime I have decided to persue the EMG only if/when I develop real weakness...
Of course the price I pay is ongoing uncertainty. But, although I think that knowing is almost always better than not knowing, in the particular case of ALS I think this is one of the very few instances where "not knowing" may perhaps be actually better than knowing ...

[DogBone]

One possible solution -- I wish I would have done this in the first place if you must have an EMG. I wish I would have gone and had the EMG done and asked the doctor not to explain everything, but just tell me if it is normal or not. My EMG was "normal" by every standard and I am sure that yours will be as well. However, if we know every detail that they see on the EMG we can go crazy. Poly - phasics simply indicate reinnervation, so you may have worn boots, pulled a muscle, slept funny, and list goes on and on. Many people freak out because they found a fasciculation. For us, that is the craziest thing ever -- How could they NOT find a fasciculation in us twitchers??? As long as everything is in the "normal" range then just have him tell you that and nothing more. Or - Your mind will get carried away on you. Another 2 cents.