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Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.

I had no symptoms prior to falling and spraining my ankle. Someone(and I won't say who) left something on the stairs which caused me to stumble and fall down the stairs. I then tried roller blading about a week later(way before I should have even tried but it was a playoff game) and fell in the same exact manner. I should have gone to the doctor for this but I blew it off. That foot has not been the same since and is really my only point of weakness.

I am not trying to argue the point that I have some symptoms of ALS and that further testing is needed and already scheduled. But, I do think that the posts in this thread(not EVO's, I quickly learned to ignore him) are a little contradictive where they say twitching is not an initial symptom but then again in the list it does say they are. The intitial poster in this thread was pretty adoment that fasciculations in regions without weakness are not ALS.

I am not looking for someone to tell me I don't have ALS. I know there is only one person that can tell me that.

I was just asking if anyone else had twitches all over their body even in areas where no weakness had set in yet?
 
Hey JP-- actually body-wide twitches are pretty uncommon in ALS. There is a misconception here, too. Twitches and fasciculations seen in ALS aren't really the same thing--as there are different causes.

Hyperexcitiability can cause twitches. So, things like anxiety, stress can even be causes of the body-wide twitches. Heck, even too much caffeine an be a cause.

When ALS strikes the nerves, they begin to die, and other nerves try to compensate for the loss--this 'trying to compensate' can cause some to feel or see the jumps in the muscle (fasciculation) Once those muscles are dead--those fasciculations stop, as there are no more nerves available.

So--technically, fasciculations seen that are part of ALS are seen when the nerves are already damaged, thus, they show up on EMG. Benign twitches can still be present--that are not the same kind of twitch, if that makes sense.

I believe you'd said you'd been under a huge amount of stress? While of course I can't say for sure--it is possible your twitches were related to that.

ALS normally affects all areas, of course, but not all on DAY ONE so to speak. So, generally, bodywide twitches are not what is seen--they will generally be localized in the muscle that is being affected--that foot, that hand, that arm, the tongue--whichever area is the first victim of this insidious disease.

It's important to clarify here that clinical weakness and perceived weakness are very different things. You may not FEEL any weakness--but very often, a doctor can test and find it. That's clinical weakness--and clinical weakness is what is needed to diagnose ALS. Along with a whole host of other things.

Normally when one sprains an ankle--even severely, foot drop isn't the result. It's sore, swollen and tender for sure..but the muscle isn't 'dying' it's 'injured'. In foot drop--the muscle is dead and/or dying. It can no longer perform it's rightful task--keeping your ankle up. Now, if your sprain was severe enough to require medical intervention and a doc said you tore or damaged ligaments or tendons--then it's certainly possible to cause foot drop -- but an injury that severe would usually require surgical intervention.

The thing with ALS is this--there is simply a lot that no one knows. But just like someone with a heart attack can get ALS -- it doesn't mean that all that have one will develop ALS. Same with Benign Fasci Syndrome. Not all with BFS will get ALS--in fact, very small percentage will.

There are two main areas involved in ALS-- UMN Upper Motor Neurons and LMN Lower Motor Neurons. LMN changes--weakness, fasciculations, atrophy eventually-- are seen on EMG. The specific pattern seen is reinervation and denervation.

In UMN -- the symptoms are clinical only-- spasticity, hyper reflexes, hypertonia, weakness, positive hoffmans or babinski, clonus -- all things a doctor sees on clinical exam.

A diagnosis of ALS requires both types of issues. There are folks here with mainly UMN issues--like me--with no diagnosis. There are some with mostly LMN--like Helen-- who has been diagnosed because the LMN shows on EMG--UMN does not.

As in any medical condition, the signs and symptoms are a list--because not all are seen in every patient. I know PALS that never saw a twitch. Others have no pain--still others have severe pain. Some progress very slowly--some very quickly. Nothing is certain with this crap condition. Just the fact that deterioration will inevitably continue. There are more than one MND. ALS is only one of them.

Did I clear that up or make it more confused? You'll note the first line of my quote 60% of patients. Not all notice that initial weakness because the other nerves are able to compensate or we are able to without realizing it.
 
I appreciate eveyone's help. This disiese is very confusing, not your post. I've already decided not to worry and live my life normally. I am not the worrying type and will let the docotrs do their job to figure out what is wrong with me. Hopefully it is not something serious. My gut tells me it is not(knock on wood). Thanks again and I will be back to let you know how I make out.
 
steeler and notme.

I believe as with many things the truth lies somewhere in between. In most cases of ALS I believe not me is right. Weakness then twitching with EMG evidence likely preceding those. Unfortunately that is not all cases. Therefore speaking in absolutes and definitively is probably not ideal. The truth is that the leading researchers don't understand all of the pathophysiology behind this damn thing. There was a study a ways back (sorry don't recall exact details) that showed 6% of ALS patients had fasiculations as initial symptom. A followup editorial to that claimed that number may be higher because some patients claimed twitching came first in retrospect. I started with twitching, and had no weakness. I had 2 normal emgs and now 4-5 months after the twitching started have an abnormal emg and lots of weakness. Diagnosis still unknown. The more I research the more I believe every person and every disease presentation is truly different.

Steeler I am with you about having a positive attitude and living the hell out of life no matter what comes.
 
I'm bumping this back to the top. Up where it needs to be seen!
 
I am almost 52, this started when I was 48. I had trouble one day climbing a step stool, something I did every day. I have stiffness if I sit in a chair too long, it is in my muscles not my joints. Within a year, neuropathy started in feet, soon cramping started, and then twitching, and now I have tremors in various pasrts of me. I have nerve problems from head to toe, cause that is where all the twitching and cramps are.
The first Dx I got was myopathy, because of the stiffness. The next Dx I got was neuropathy, because of the the nerves. Then I was told it was a vitamin problem or my thyroid. I was told repeatedly that if my symptoms progressed, next time he would order an EMG/NCV. Three years passed and no EMG. I found another Neurologist. This one ordered an EMG/NCV. I have decreased amplitude in both legs, in other words, axonal neuropathy. He said I have Chronic Idiopathic Axonal Neuropathy. That is what they call something if they don't know what it is: unless you or elderly, diabetic, alcoholic, etc... and it usually does not cause all the symptoms I have.
I had the chance to see an "Expert". He had another EMG/NCV test done on my legs, but he totally dismissed the results because it did not fit into what he thought was going on. Both tests, done independently showed axonal neuropthy. He proceeded to tell me I had BCFS. That is something that is never Dx if you show actual denervation. It is a disorder of hyper activity of the nerves and muscles, and happens in young athletic people. To top it off, if you show the "nerve" (pun intended) to challenge such a Dx, then you are hysterical, which is another "symptom" of BFS.
I am having an EMG/NCV done on my upper extremities on wednesday because of the twitching, cramps, and tremor in my hands, I let you know if I'm still hysterical.
 
When I read this post, It certainly sounds like my PALS has BFS. Especially since he has not progressed much in 18 months and his twitches are sort of random. But he as had 2 EMGS from 2 doctors (the 2nd was done by the Director of the MDA/ALS clinic) which were apparently dirty since he was told he has probable ALS by both and is enrolled now in the clinic. His twitching has actually subsided a bit in the 18 months, although he now has some cramps. He had a muscle biopsy (when they were looking for muscle infections) which showed some atrophy, and thus was consistent with ALS.

He has no "clinical weakness", more like the "perceived" weakness described above. His legs are rubbery and they often feel like they are melting after walking. He does not trip or have foot drop or anything like that. He sometimes uses a cane for security.

He is about to go in for another EMG: it has been about a year since his last one. (His doctor is wondering what is going on!)

Our hopes have been raised by this thread, but I don't see how the doctors could possibly be so wrong.

Any comments or questions on this case? We are very anxious.
 
Will, where are you going in AZ?
 
We are going to the MDA/ALS clinic at Barrows Neurologic in Phoenix.
 
Will, unfortunately clin iCal weakness doesn't have to be severe. I have clinical weakness in all my. Limbs...but I only knew it was in my hand that no longer worked properly.

ALS affects each differently, as stated by so many. My legs sound much like you described now, but on exam, they show loss of strength when tested and they cramp and spasm often. When my issues first started, my hand was the main concern. All twitches were localized in my hands, too.

That feeling weak you described had some sort of clinical corre lation or ALS wouldn't have been mentioned unfortunately. A second opinion is always suggested! We have a saying around here...it can only be ALS when it can't be anything else.
 
So, I said I was having an EMG. He did like everyone else, wanted to know why I wanted it done. Then he wanted to know why I didn't use previous doctor. After a half hour we proceeded. I think he thought maybe he would not find anything. Then once he started he kept leaving the room to get stuff, and talk to my PCP just down the hall.

The only thing he told me tonight was that I showed fibrillations on needle exam. I actually could tell it was in both hands and my tongue and jaw. All he said was "The test shows fibrillations, but they are good ones, not bad ones", and "It's complicated but we'll figure it out!"

Is it possible to have good fibrillations, aren't they a sign that the nerves were damaged and that they are trying to repair themselves?!?

Am I crazy or do doctors go round the bend on some stuff!
 
Willow, you're not crazy, they certainly do. Personally, I would get a copy of the report and get it interpreted. But, ALS shows some pretty distinctive waves, and apparently those weren't seen, which is a good thing.

I know nothing of docs in your area, but my pat response is to see a neuromuscular specialist from the get-go.
 
MY update: EMG results show large, complex motor unit potential with fasciculation. ( I spoke in error in previous post it did not show up in my tongue/face, must have misheard.) But, currently my thumbs, hands and forearms have " fasics, polyphasic activity, and increased MUP amplitude amplitudes and duration, everything else on the EMG was normal. HE thinks it could be axonal, but not showing classic pattern. He thinks it's not motor neuron or myopthy: not clearly defining. Just kept using the word very complicated.
 
You have been going the wrong way with all of this Willow.

The correct thing to do is agree with a diagnosis of anything less than ALS and be extemely happy for it!

Likewise, if ever given a diagnosis of ALS, you tell the doctor to prove it! Then you go and get a second opinion and make that doctor prove it.

I don't understand why you didn't kiss those doctors that told you you don't have ALS.
 
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