Question about Fasciculation’s

[Mike in Maine]

When I first started down this road in 08, I did not have any muscle twitching, it seems that over the last couple of years the twitching has really ramped up, at first mostly on the left side of the body, but now it is pretty much all over. At night when all is silent and I’m laying still I really feel it. Today my face has been bouncing all over the place. My Doc ensures me that based on all the testing (there has been a bunch) that it is not ALS, nor do I seem to have the symptoms of ALS such a muscle wasting or the loss of strength. What I can find on the internet about PLS (not much) does not mention fasciculation as a symptom; do any of you find this as an issue?

 

[olly]

As theres very little info out there on pls and neuro's know very little you wont find any connection.
Now ask a pls patient and the answer is yes.
I started with twitching in my lower legs and upper arms around 10mths after spasms started.....given that was13-14yrs ago and no real atrophy shows there benign.
I think its like in ms (they get twitching)its caused by nerve/muscle irritation.
Having said that about 3+yrs ago i developed (still have)constant twitching in my left hand that does have noticable atrophy in the palm and base of thumb.....you can see the tendons in the left palm were as my right hand has much more meat on it.

 

[Tokahfang]

Remember also that having one problem (upper motor neuron disease) doesn't make you immune to another problem (benign fasciculations).

 

[dalvin]

i get them frequently too. one spot in particular used to drive me nuts till i figured out what was happening, right at the belt line where my cell phone is, i thought it was vibrating( getting a call) but when i checked, no body. was funny after a while.

 

[olly]

I used to get the thumpers early on...now there very fine and mostly don't feel them just odd tickle feeling but if I look they are there.

 

[AKmom]

like Caroline (olly) has mentioned, I also get them. At first they would be big twitches where the whole muscle would jump and twitch. Now they are very fine and feel more like a vibration. You can just barely see them under the skin. I too have some atrophy of my hands and around the knees. But this is after 20+ years of dealing with this and the atrophy is minimal for me. My hand atrophy shows on the top of my hands and at the base of my thumbs by the wrists. There is only one spot on my knees, the sartorious muscle, which is the muscle that would twitch really hard for months about a year or so ago, that has atrophied slightly (sunk in). It could be that I have not been walking as much as I use too. Lack of use. But I know that I still do not have ALS.

So the information out there on the net for PLS does not necessarily have all the information available in regards to PLS.

 

[Mike in Maine]

Thank you for the answers, I’m sure there will be many more questions in the days and months to come.

 

[billbell52]

I have had PLS for 11 years and I have had fasciculations from the beginning. It is most notable in my calf muscles but I have them all over. I generally don't feel them. At one time it seemed constant, about 1 a second. Over the last few years it slowed down to 1 every 10-20 seconds. I was worried it was ALS but my neuro did not seem concerned.

 

[wendya432]

Considering I haven't been diagnosed you can take this with a grain of salt.. But I have had them since all this has started. More intensely lately, about 2-3 years in from when everything started.

Sometimes I don't feel them and just see them, sometimes they are completely annoying! Mostly they are in my legs/buttocks. But also have them in my arms and abdomen.

I figure it must be some sort of nerve "short circuit" thing going on. None showed up on my EMG, and I don't have any muscle wasting. So I just try to ignore them.

 

[04grace2]

I too have had them since the beginning. They seem a bit better now but are still there. The first neurologist saw them and along with an abnormal clinical exam suggested that I may have ALS. He suggested I see an ALS specialist. I also had an abnormal neurological exam with the specialist. He mentioned that he felt them, but my emg was normal. I have a working diagnosis of PLS as they wait to be sure it stays upper motor neuron. I also experience quivering muscles. It seems to affect a larger part of the muscle. The specialist said that there is a quiver that seems to go along with spasticity. I feel the quiver in my legs and arms, but especially in my neck muscles right before the spasms begin. The neck spasms are the most painful for me.

 

[johnnyliverpool1]

i think that my twitches could in fact be simply very fine clonus......why...cos they vary from barely noticeble to quite strong...but what do i know...johnny