EMG changes before weakness? How long?

[kaspa]

Hello,

I know that doctors say if you have fasciculations, about 6 - 8 months no additional symptoms excludes als.

But then, I am reading people who state they had dirty emg's and it took years (!) to perceive weakness in that region. It doesn't make sense. I thought denervation/fibrillation means weaknesses within a short time frame.
Anyone knows the average time it takes from *true onset* to first symptoms?

I have benign twitches since years but always experience new symptoms such as tingles in tongue. What if they are fibrillations? (I know, alot say you cannot feel them, but leave that aside) I wanted to exclude als by time, but it seems the 8 monthes rule does not apply for denervation, as it takes longer?

 

[preacherman]

Guess I'm not sure exactly what the question is here, but just to share my experiences so far...

I had a dirty EMG in Feb of 2016.... whole left side had issues, also muscle in back, neck, shoulders... I still can use all muscles.

A little weakness in my neck. Back is now giving me problems... though it may be because I WAY overdo it... still working on my garden, etc.

Left hand and arm getting very weak, but I can still use them for most anything I want. Gets tired and sore very quickly but still works.

Still I see where people are diagnosed and gone 10-11 months later.
Bottom line is that there is no real standard.
ALS is a VERY individual disease.

Even on this forum, I see people who were diagnosed 10 years ago and they are still going with a reasonable amount of functionality.
And I have seen those who are diagnosed and six months later they are basically wheelchair bound.

Twitches.... my left thumb muscle has been twitching since before my first EMG... it was one of the places they checked specifically and found no real issue, so?
My tongue looks like worms crawling under the skin all the time... it has since before the first EMG; I can still talk, I can still eat with no real issue.

Again, there are those who are diagnosed and six months later have a feeding tube.
Very individual.
No real 'normal'.

 

[kaspa]

Well, the question is: How long does it take from *true onset* (detectable emg changes) to first symptoms (such as weakness)?

There is a 8 month rule for fasciculation, but what's the time frame for fibrillations?

 

[kaspa]

Or: How long are the early stages of ALS where there are no symptoms?

 

[Atsugi]

Kaspa, there is no standard or normal time. There are no stages to ALS. Different people have different experiences and different time frames.

These things occur in this order.
1. When ALS begins to damage motor nerves in the brain and brain stem, the damage is detectable by EMG.
2. Once a nerve is destroyed, the patient may notice that one or more muscles is affected. Maybe the muscle twitches. Eventually, that muscle will lay limp and unusable because it is not getting a signal from its nerve.
3. If a muscle lays unused for weeks or months, it loses its shape, smooths out and loses its bulk. That's how atrophy works in ALS.

 

[kaspa]

Atsugi,

Thank you for your answer! When I had a neuro visit, the neuro actually said "it usually goes rather quick". Is this true? What's "rather quick"? When having fibrillations what time frame is expectable or average until weakness occurs? There must be some studies out there, but to my surprise I cannot find any.

I am just very anxious about it. I am going to do therapy about it. But at the moment, my concern is the possibility of feeling those things that usually get detected by your described first point (e.g. fibrillations).

Thanks again for your time, I don't mean to bother anyone, because I know, I might be irrational, but I cannot help but to be scared.

 

[WendyWooG]

Hi Kaspa
You are asking a question again that both Atsugi and Preacherman have already answered. There is no set time it's different for everyone. This is why it's so hard to get a prognosis even when you have been diagnosed. Most neuros will only give a very woolly average indication.

The thing to take into account though is that an abnormal or dirty EMG doesn't always mean als. There are lots of diseases that can cause abnormal emgs which is why you have to trust your doctor as they are the experts at interpreting the findings. When investigating neurological problems time takes on a whole new meaning, the issues are complex and varied and take a lot of investigation and comparison which is why you get 3 month and 6 month call backs, part of the diagnostic process is seeing the route your progression takes.

Wendy

 

[kaspa]

Again, thanks for your answer.

Docs keep telling that if you twitch, without weakness, a few months are sufficient to rule out als. (There are studies put there regarding als with twitching as initial symptoms).

I simply wonder whether this can be drawn onto fibrillations. But I am not well versed in the medical field.

 

[kaspa]

If I have fibrillations of the tongue, how long would it take to notice weakness? There must be an answer...days? weeks? months? years?

 

[Angiegal]

Kaspa.
Every PALS has a different story. As Preacherman, Mike and Wendy have said, there is no set timeline to this diagnosis.... Have you heard the phrase, "when you've met one person with Autism, you've met ONE person with Autism"? ALS is like that.... different for each person travelling this bumpy road.

Angie

 

[KimT]

I think you might be confusing fasciculations with fibrillations. You can see and feel fasciculations and they can also be detected on EMGs. Fasciculations, alone, mean nothing and many people have them with and without diseases.

Fibrillations are detectable by EMG and, along with positive sharp waves, signify something is actively going on. To diagnose ALS you need both active and chronic changes. Take fasciculations out of the equation.

I agree with what you have already been told. There is no timeline or order of events that are "normal" in all ALS patients. The only thing normal is the end result.

Please stop asking the same question in hope of getting a different answer. Every case is different and that's why it is so hard to diagnose. I had no weakness for a full year after a dirty EMG that showed both active and chronic denervation. Then I had perceived weakness for another six months before I showed any clinical weakness. To top it off I had all kinds of sensory things going on in my legs and still do. It's possible to have ALS and other things along with it.

Please let your doctors to their work. We can't tell you anything more.