How quickly do fasciculations spread in ALS?

[JEB1979]

I first started experiencing ongoing fasciculations in both calves three weeks ago. Yesterday, I started twitching occasionally in both feet as well as my arms. Since this morning, my calves have been twitching steadily, as well as my upper leg occasionally, and my left upper arm is now twitching several times an hour.

To go from calves to so many other parts of the body in just three weeks, is this typical of ALS? Or is it indicative that it might be benign fasciculation syndrome? I don't know whether to feel hopeful or scared by this development.

 

[ottawa girl]

Personally, I'd feel hopeful. I had clinical weakness and atrophy long before fasciculations. And the latter really only occurred in the affected limb.

Your appointment is in 48 hours. Hang tough.

 

[Nighthawk]

I see you are in Puerto Rico. It looks to me that this disease is extremely rare in Puerto Rico.
I haven't heard about too many cases of ALS in the Island, in fact, I believe that there is not even ALS Association there.
It's a disease more common here in the States.

You say you are having muscle twitching simultaneously in several parts of your body and, that's not the way ALS manifests itself.
ALS twitching presents only in one part of your body, such as a hand. And, it comes ONLY AFTER you have Clinical Weakness in those group of muscles in the hand, for this example.


NH

 

[JEB1979]

There actually is a local ALS foundation in PR. However, though I'm from PR, I'm currently working overseas. The language barrier makes the whole ordeal much more difficult.

Yes, the muscle twitching began in both of my calves, but it's spread to other parts of my body in the past few weeks.

I've read so much conflicting information on ALS...

 

[Danielson]

That sounds like good news to me....I know we've heard it before but when you are in this ALS "state of panic" it is very reassuring.

I have widespread twitches too and it is good to hear that is unlike ALS.
I'm driving my wife crazy by telling her about each new location of twitching.

Unless all these muscles are failing at the same time, it pretty much has to be BFS or something else.

I'm still dealing with the very weak arms, but have been told it is neck problems and totally unrelated to the fasciculations. Still, it's weird that I have both!

I still want someone who knows alot about EMG's to explain to me that if you have your test while not twitching, it would still show up if you had ALS. That's the one thing that keeps sucking me back in to all this.

 

[JEB1979]

That's one of the things I'm not clear on. The weakness and clumsiness is in my right arm, but the fasciculations are in my calves. I've had discomfort in my right leg in the past, but I've always assumed it was due to the herniated disc.

At the very least, this makes me slightly less nervous going into tomorrow. There's definitely something wrong, I just hope it's something treatable. The fact that my aunt died from ALS iand my symptoms resemble hers is what scares me the most.

 

[Danielson]

It was a lot like that with me. Weakness (in both arms) but twitches in my calves. The Neurologist couldn't see the twitches in the first office exam and I didn't have any during the EMG. But soon after I had them again, and everywhere! Now there are not many places I haven't had them and they are constant in my legs and biceps, shoulders etc.

Should I get another EMG? Most people say "no" as ALS would have showed up despite the lack of twitching. I do not understand what the EMG shows if you don't have twitches that indicates ALS?! Would it show something else that indicated ALS besides the fascicualtions?

Anyway, they are saying my herniated discs are causing my weakness. And it is a different type of weakness than I hear most people report. Both arms feel extremely weak, but I can still use them. No finger curling. I do have some pain and cramping occasionally between my thumb and index fingers.

I see a specialist about my neck in a week or so. I hope he confirms that my weakness is due to my neck. I have a few herniated disks and some spinal cord compression. It does make sense to me but when you read all this stuff....reasoning goes out the window.

My neck does not explain my fasciculations in my lower extremities though. I think they may be because i was inactive for a long period of time and now am trying to use the muscles.

Hope your doctor visit goes well and you can report some good news!

 

[JEB1979]

Thanks for your message, Daniel. I hope all is well with you.

I just got done with my visit at the doctor's office. This was a new neurologist (very young one, too...I don't know if that's good or bad), and he did what seemed to me to be a strength test, along with testing sensations and such. He ordered a blood test, an MRI (actually two - neck and full spine), and x-rays of my spine and neck, along with an EMG. I had the blood tests and x-rays done today but the other tests aren't until next Tuesday, and I'm supposed to have my appointment with the doctor immediately afterwards.

Another thing I don't know is good or bad...if it points away from ALS I suppose it's good...this morning on the train ride to the hospital I actually started having strong fasciculations in my left cheek! It really freaked me out, so I took my phone out and recorded them to show to the doctor. Is this something common in ALS, or does it point away from it? They lasted about ten minutes and haven't come back since then.

 

[JEB1979]

One thing I forgot to mention, he said the EMG they're going to do isn't exactly a typical EMG, but a 'type' of EMG, he said they're going to put a needle into my muscle to measure something.

Does this type of EMG sound familiar to anyone? How painful is it...?

I'm sorry if I come off as impatient or pushy. This is now my fourth week going into this and I feel as though I'm no closer to finding out the answer than when I started, only thing that's happened is that the fasciculations have spread to other parts of my body (while never stopping in their original locations...).

I realize I'm lucky in that I was able to get to see a neuro directly instead of having to go through a GP. Hopefully next week I will be able to get some real answers, hopefully good ones...

 

[Ms. Pie]

Yes, that's an EMG and Nerve Conduction Study. It depends how you deal with pain as to how much it hurts.

 

[Debd4l]

I had my EMG a few weeks ago..I deal with pain pretty well and I will be honest with you both the NCV and EMG are very uncomfortable. If I never have to have those tests again I will be happy. Good luck with your tests, they do tell the doctors very important information but they are somewhat painful.

 

[Nikki J]

I think the EMG experience must vary a lot from person to person. I wonder if it is somewhat dependent on the examiner as well. I have had one as part of a research study. It was done by an ALS neurologist and I am sure his technique was good. It included all areas ( limbs ,torso bulbar). It was not that bad. There was only one stick that was actually painful everything else was at most minimally uncomfortable. I have no qualms about going for my next research visit. I hope yours is as good as mine both in experience and in results (mine was normal)

 

[Will]

My PALS doesn't much care for EMG's (He's had 4). I think he is going to take an Ativan prior to his next one. THat might help a little.
And yes, fasics can been seen, but there is much more to the emg that just looking for fasics. The Muscle Action Potentials are measured and their amplitude and frequency apparently are meaningful to the doc.

 

[pearshoot]

i had 4 emg's, and nct's depends on experience of tester last one a breeze, neuro retired air force who has done nothing but als during her career i see her at the als clinic every 3 months

 

[JEB1979]

My mother linked me to an article from a UK newspaper she googled that says in cases of ALS, the fasciculations do not stop when you move the affected limbs. Is this accurate? I would assume if it were so easy to discard ALS as a possibility, this test would have been performed by my neuro on my first visit, wouldn't it?